NHS Hospital Mistakes Blunders Father’s Brain Stored 22 Years After Death

NHS Mistakes Misconduct

A person’s brain being found in the wrong corpse by an undertaker was among incidents reported by mortuaries from 2014 to 2016, a BBC Freedom of Information request has found.

There were 278 serious incidents in total in the three-year timespan in England, Wales and Northern Ireland.

Accidental damage to bodies was reported 89 times over that period.

The Human Tissue Authority (HTA) said that when incidents occur, thorough investigations are undertaken.

Wrong bodies released

Organs were discovered by hospitals after the rest of a body had been released to a family on 13 occasions, while the wrong body was released to families 36 times.

University Hospitals of Leicester NHS Trust recorded the largest number of incidents – 11 – over the three-year period.

During post-mortems, a deceased person’s body is opened and the organs removed for examination.

The pathologist will return the organs to the body after the post-mortem has been completed, and tissue will generally only be retained where a death is suspicious.

The HTA defines a serious incident as “human errors or system failures that lead to damage to bodies or misplaced bodies or body parts”.

Reportable incidents

  • An undertaker discovered a brain in the abdominal cavity of a body which did not belong to it (Warwick Hospital)
  • Human error resulted in a mix-up of brains (John Radcliffe Hospital, Oxford)
  • Memory stick containing unencrypted images from two post-mortem examinations was left on public transport (Newcastle Upon Tyne Hospitals NHS Foundation Trust)
  • A large corpse could not be removed from a mortuary freezer because of the way it had frozen (King’s College Hospital, London)
  • Wrong body released and cremated (Southport & Formby District General Hospital)

Sarah Simpson
Image caption Sarah Simpson said her father’s brain was stored for 22 years after his death

Sarah Simpson found out that her father’s brain and other parts were stored against family wishes for 22 years after his death at South Tyneside District Hospital.

“In March earlier this year, police knocked on my door, saying it’s about my dad, Terry Simpson.” she said.

“I said it can’t be him as he has been dead for 22 years, and it must be about my brother, with the same name, who had died a few months earlier.”

The police explained that her father’s organs were at the hospital, and were about to be released, and talked to her about funeral options.

Terry SimpsonImage copyright SARAH SIMPSON
Image caption Terry Simpson was killed in a fall in 1995

“There had been no permission to take any body parts at any time. My dad believed in reincarnation.

“He used to say, you’re not taking my eyes or anything because I don’t know where I’m going afterwards’,” she explained.

She said she had not been given any answers about why it had happened, and the incident had sent her family into panic.

“I’ve just had to have another funeral for my dad,” she said.

South Tyneside NHS Foundation Trust’s Medical Director Dr Shaz Wahid said: “We met with Ms Simpson in September 2017 to explain the conclusions of our internal review into the retention of forensic human tissue samples at South Tyneside District Hospital and the measures we have taken to prevent this from occurring again in the future.

“Once again, we apologise unreservedly to Ms Simpson and all the families involved for the undoubted distress this must have caused.”

Rare events

Chris Birkett, director of regulation for the HTA, said: “Incidents such as these are distressing for the families of those involved and, although they are rare, should never happen.

“If an incident does happen, we work with the establishment to ensure that a thorough investigation is undertaken, that lessons are learned, and that improvements are made to mitigate the risks of similar incidents happening again.”

He also said the number of incidents was small given the fact that 330,000 bodies enter the care of mortuaries in England and Wales annually.

Leicester’s Hospitals said it dealt with a large number of bodies, as one of the biggest and busiest mortuaries in the UK, and had an excellent culture of reporting.

Oxford University Hospitals said the very regrettable mix-up of brains was because of a labelling error at the John Radcliffe during a specialist examination as part of the autopsy process, and that an external expert had reviewed its processes in response.

Newcastle Upon Tyne Hospitals NHS Foundation Trust said it had reported the data breach to the Information Commissioners Office and HTA, and that its guidelines had not been followed.

Kings College Hospital said that new procedures had been introduced after the freezer incident to stop the same thing happening again and it had informed and apologised to the family.

University Hospitals Coventry and Warwickshire NHS Trust said a full investigation had been undertaken into the error at Warwick Hospital and it was rectified immediately.

Dementia: Inside The Human Brain Neuroanatomy Neurology Video

The Human Brain Autopsy

The brain tissue in a person with Alzheimer’s has progressively fewer nerve cells and connections, and the total brain size shrinks.

Dementia with Lewy bodies is a neurodegenerative condition linked to abnormal structures in the brain.

The brain changes involve a protein called alpha-synuclein.

At first, Alzheimer’s disease typically destroys neurons and their connections in parts of the brain involved in memory, including the entorhinal cortex and hippocampus.

It later affects areas in the cerebral cortex responsible for language, reasoning, and social behaviour.

Dementia isn’t a single disease.

Many of these diseases are associated with an abnormal build-up of proteins in the brain.

This build-up causes nerve cells to function less well and ultimately die.

As the nerve cells die, different areas of the brain shrink.

Dementia symptoms include:
  • Trouble holding urine (incontinence)
  • Increase in memory loss and forgetfulness.
  • Inability to use or find the right words and phrases.
  • Difficulty doing challenging mental maths exercises, such as counting backwards from 100 by 7.
  • Increase in social withdrawal.

One of the main topics of discussion when someone is diagnosed with dementia is the “stage” of the disease — a marker of how far it has progressed.

Dementia symptoms can range from mild memory loss to more severe cognitive difficulties that make it hard to manage daily activities without help.

These symptoms are broadly grouped into categories called stages that help guide doctors and families in their care of dementia patients.

“Usually we think of memory loss as a continuum,” explains Raj C. Shah, MD, medical director of the Rush Memory Center at Rush University Medical Center in Chicago. “Dementia is defined as chronic memory loss, ultimately affecting quality of life.”

DIGNITAS: Questions of Morality Information Facts – But What is DIGNITAS ?

Assisted Dying Dignitas

Objectives and purpose of DIGNITAS

Many people do not agree with or believe in assisted dying or the moral/ethical/spiritual difficulties that arise around this very controversial subject.

And of course not forgetting and to state very strongly that in the United Kingdom assisted dying is illegal and punishable by law and (should not) be considered by anybody or anyone under any circumstances at any time.

But in some countries assisted dying is legal.

Some organisations within these countries specialise in the main subject and object of assisted dying.

One of the more well known of these organisations is DIGNITAS.

We may or may not agree or disagree in the subject matter that these companies cover, but exactly what are these companies policies? And exactly what are they about and what do they offer?

Many of us just do not know, care to know or want to know.

But for the sake of morality and for the respect and decency of those who are sick and dying who themselves turn to these organisations who they see as their only hope to allow them to die with dignity, then it is surely our duty to at least try to understand what these organisations offer, to who they offer it and how.

Below we post the Content of the information-brochure of DIGNITAS in their own words.


The association ”DIGNITAS – To live with dignity – to die with dignity” was founded on 17 May 1998 at Forch (near Zurich). The organisation, which pursues no commercial interests whatsoever, has in accordance with its constitution the objective of ensuring a life and a death with dignity for its members and of allowing other people to benefit from these values. DIGNITAS pursues these objectives by assisting its members everywhere in word and deed, within the limits of the possibilities available to the association and as appropriate in individual cases.

In accordance with this purpose the activities of DIGNITAS comprise, amongst others:

  • Counselling in regard to all end-of-life issues
  • Cooperation with physicians, clinics and other associations
  • Carrying out Patient’s Instructions and patient’s rights with regard to doctors and clinics
  • Suicide- and suicide-attempt prevention
  • Support in conflicts with the authorities, with the management of nursing homes and with doctors not chosen by the patient
  • Further legal developments in regard to questions about “the last issues”
  • Accompaniment of dying patients and assistance with a self-determined end of life.

For a one-off joining fee of Swiss Francs (CHF) 200 and an annual membership subscription of at least CHF 80 – the amount is at each individual member’s discretion – one obtains access to the services of DIGNITAS and supports the association in its commitment to safeguarding human dignity and the human rights of its members in life and in death, whenever these may be regarded as under threat.

DIGNITAS invests any and all accounting surplus in the expansion of its services and in suicide prevention.

DIGNITAS’ Patient’s Instructions

Many people are afraid of finding themselves in a hopeless condition or unconscious and connected to machines in a hospital and being kept alive artificially for a long period of time. They are afraid of pointless operations and ineffective pharmaceutical therapies. They would like to give life to their years, not years to their life.

Against this helplessness and feeling of being at the mercy of high-tech medicine, there is only one tried and tested method: Patient’s Instructions which can be legally implemented. This involves, on the one hand, a binding unequivocal text drafted by experienced specialists, and on the other hand, an efficient organisation such as DIGNITAS which can ensure that the Patient’s Instructions are carried out, even, if need be, in the face of resistance.

For their dying phase, and for the duration of their membership, DIGNITAS supplies its members with legally effective Patient’s Instructions. These must be respected by doctors and hospital nursing staff and, in order to ensure that those instructions are carried out, DIGNITAS provides its members with the direct support of a lawyer, if necessary.

Because Patient’s Instructions are closely related to the law of the country in which they are issued, this service can generally only be granted within Switzerland.

Accompanying dying patients at the end of their lives and assistance with suicide

A further important service provided by DIGNITAS is accompanying dying members at the end of their lives. Conversations with the sick member and – at his/her request – with those persons close to him/her, are intended to make saying goodbye easier for all those involved.

Anyone suffering from an illness which will lead inevitably to death, or anyone with an unendurable disability, who wants voluntarily to put an end to their life and suffering can, as a member of DIGNITAS, request the association to help them with accompanied suicide.

Legal assistance for suicide with DIGNITAS

DIGNITAS’ qualified staff have a great deal of experience with end-of-life issues and accompanying dying patients. They will first establish, in detailed discussions with the member, whether they meet the pre-conditions to be complied with by DIGNITAS for assistance with suicide, and whether the wish to die reflects the settled and declared will of the member. In this, it is particularly important to determine whether the member’s capacity of discern­ment is impaired in any way, and whether anyone close to him/her, or third parties, are pushing the member towards suicide for any reason.

In the case of medically diagnosed hopeless or incurable illnesses, unbearable pain or unendurable disabilities, DIGNITAS offers its members the option of an accompanied suicide. DIGNITAS procures the necessary medication for this, a lethal, fast-acting and completely painless barbiturate which is dissolved in ordinary drinking water. After taking it the patient falls asleep within a few minutes, after which sleep passes peacefully and completely painlessly into death.

Naturally, each permitted use of a fatally effective medication requires a Swiss doctor’s prescription, for only by this means can the drug legally be procured. People resident in Switzerland should first discuss with us the question of which doctor may issue the pres- cription: in most cases nowadays, the person’s family doctor is prepared to do so.

Where this is not the case, and for people who are not resident in Switzerland, DIGNITAS calls on independent Swiss doctors who cooperate with DIGNITAS. After an in-depth evaluation of the member’s written request and medical information, and following at least two face-to-face meetings with the member (which allows the doctor to satisfy him- or herself that the member meets the preconditions for the desired accompanied suicide) the prescription may be issued to DIGNITAS.

From this time onwards, the member wishing to die can arrange the time of their accompanied suicide with DIGNITAS. There are always at least two people present at an accompanied suicide: they can then testify as to the course of events.

Frequently, members want to die in the company of those closest to them. DIGNITAS emphasizes the importance of involving friends and relatives in the process: the “long journey” that is assisted dying requires careful preparation for and consideration of the appropriate time to say farewell.

DIGNITAS’ experience shows that only a very few people who enrol as members take advantage of the service for assistance with suicide. They usually feel sufficiently protected by the Patient’s Instructions. If these are observed – because they specify that no life-prolonging measures are to be initiated – any life-threatening situation will lead to a natural death. Membership of DIGNITAS endows members with confidence: in the event of a hopeless situation, a member can say “I have had enough now, I want to die.” This feeling of security is of exceptional importance to mature human beings.

The legal basis

Article 115 of the Swiss Federal Criminal Code (StGB) states that:

“Whoever, from selfish motives, induces another person to commit suicide or aids him in it, shall be confined in the penitentiary for not over five years, or in the prison, provided that the suicide has either been completed or attempted.”

In plain English that means: anyone who helps someone to commit suicide, providing they are not acting out of selfish motives, cannot be punished. The assistance with suicide provided by DIGNITAS rests on this legal basis. As the DIGNITAS escorts are paid by DIGNITAS itself, selfish motives are out of the question. DIGNITAS works on an indisputably legal basis.

The people behind DIGNITAS

DIGNITAS’ structures of association and organisation have been deliberately chosen so that work can be performed efficiently and without conflict, and so that all energies can be invested in the service of the members. At DIGNITAS, the Secretary-General ensures that the day-to-day activities of the association are in accordance with its constitution. He determines the required legal and organisational structures. This task is performed by Ludwig A. Minelli (Forch), a lawyer and the founder of DIGNITAS.

A committee of specialist consultants sits alongside the Secretary-General to answer all expert questions. This committee usually contains, amongst others a doctor and a lawyer.

A team of dedicated assistants is available to answer all membership questions, to help with preparations for accompaniments and for counselling, etc.

The members of the escort team are all experienced and qualified, and they regularly undergo further training and instruction.

The management of DIGNITAS is dealt with by Ludwig A. Minelli.

The membership of DIGNITAS

DIGNITAS com­prises different groups of members. A small group of active members forms the basis of the association; this group created the constitution and thus set the goals for which DIGNITAS stands, and it oversees the realisation of those goals.

The committee members have the task of acting as specialist consultants to the management of the association. They are all qualified in their respective specialist fields.

In principle, all adults can become ordinary members of DIGNITAS even if they are not resident in Switzerland and have foreign citizenship. However, we must make it quite clear that DIGNITAS can only provide its members with support within Swiss national territory.

Members who want to secure the services of DIGNITAS have the right to legally effective Patient’s Instructions, to being accompanied at the end of their lives and also to assistance to an accompanied suicide. In addition they are entitled to counselling, so far as the association can provide it, in everything concerning their human dignity in life and in death. DIGNITAS attaches great importance to providing its members with contacts for whom humanity is of great value. The DIGNITAS motto “To live with dignity – To die with dignity” is a promise.

In order to join DIGNITAS, one only needs to fill in the declaration of membership and send it to DIGNITAS. DIGNITAS will confirm the acceptance of membership in writing and provide the DIGNITAS Patient’s Instructions form. With this letter the new member also receives an invoice with detailed payment instructions. The member fills in the Patient’s Instructions and returns the original to DIGNITAS. DIGNITAS registers the Patient’s Instructions and provides the member with sufficient copies. This concludes the process of becoming a member of DIGNITAS.


In order to access the service of an accompanied suicide, someone has to:

  • be a member of DIGNITAS, and
  • be of sound judgement, and
  • possess a minimum level of physical mobility (sufficient to self-administer the drug).

Because the co-operation of a Swiss medical doctor (physician) is absolutely vital in obtaining the required drug, further prerequisites mean that the person must have:

  • a disease which will lead to death (terminal illness), and/or
  • an unendurable incapacitating disability, and/or
  • unbearable and uncontrollable pain.

Any member of DIGNITAS – no matter whether resident within Switzerland or ‘abroad’ – can ask for an accompanied suicide to take place at the DIGNITAS’ premises. In addition to meeting the prerequisites set out above, the member must submit a formal request for the preparation of an accompanied suicide to DIGNITAS. Based on our experience, one has to consider approx. 3 months for the preparation of an accompanied suicide. This period depends mostly on how fast the necessary documents are provided in the requested quality. This request must comprise:

  1. A personal, signed and dated letter to DIGNITAS, preferably typed, in which the member asks for an accompanied suicide with the help of DIGNITAS. The letter must state the reason(s) for making the request and must describe the member’s present physical condition and how it affects him/her.
  2. A biographical sketch describing the member’s childhood, school life, family situation and the most important events in life. Furthermore it should inform about who is supporting the wish for a self-determined end of life and who would probably travel with the member to Switzerland. This biographical sketch will help the doctors assessing the request.
  3. One or more up-to-date medical reports together with two or three older ones. These reports must provide substantial information on the case history, diagnosis, and – if possible – actual and suggested treatment /measures as well as prognosis. The most recent report must not be more than three to four months old, and all reports must be clearly legible.

It is important to ask doctors and clinics to provide copies of medical reports at an early stage. This will help avoid unnecessary complications and delays. The reports must be in English, French, Italian or German; for other languages official translations must be obtained and provided.

Once DIGNITAS receives a member’s completed request, it can be processed and passed on for assessment to the medical doctors cooperating with DIGNITAS. Assuming that the doctors agree to help in the specific case (by giving the so-called “provisional green light”), DIGNITAS will inform the member after which all further steps may be discussed in detail. The “provisional green light” is the preliminary consent of a Swiss medical doctor, which bases on the request and the medical file. However, definite decision remains reserved until personal consultation between the Swiss medical doctor(s) and the member.

The actual course of the accompanied suicide

For people who live in Switzerland, the accompanied suicide generally take place at their home.

Members residing outside Switzerland travel to DIGNITAS only after having received the “provisional green light” and on a mutually agreed date. The accompanied suicide can take place at convenient premises provided by DIGNITAS, given that the consulting Swiss medical doctor has written the prescription for the lethal drug in the sense of a “definitive green light”.

The member wishing to have an accompanied suicide determines the course of action to suit him- or herself. The escorts / hel­pers of the DIGNITAS team will ensure the correct technical procedure.

After taking an anti-emetic, the member may ingest a fatal dose of Sodium Pentobarbital (NaP), usually 15 grams. This is normally administered in a glass of water, approximately one decilitre.

Pentobarbital of Sodium – also called Sodium Pentobarbital or Natrium-Pentobarbital (NaP) – is an approved sleeping and narcosis drug. As it is alkaline and does not taste pleasant, something sugary may be drunk or eaten immediately afterwards.

Members, who cannot swallow and who are fed via a gastric tube will administer the drug themselves via this tube. A member who can neither swallow nor handle the gastric tube may, by pre-arrangement, administer the Sodium Pentobarbital intravenously. For this it is advantageous that the patient arrives at DIGNITAS with a prepared and properly functioning intravenous access point.

In every case, for legal reasons, the patient must be able to undertake the last act – that is to swallow, to administer via the gastric tube or to open the valve of the intraveneous access tube – him- or herself. If this is not possible, DIGNITAS is unfortunately unable to help.

After taking the drug, the member will fall asleep within two to five minutes before slipping into a deep coma. After some time, the Sodium Pentobarbital paralyses the respiratory centre which leads to death.

This process is absolutely risk-free and painless.

One member’s last words to his spouse were: “I feel fine; everything is so relieving”. Next of kin experience the proceedings as dignified and peaceful which helps them to handle events afterwards very well. The empathetic accompaniment and support given by the DIGNITAS escort team contributes substantially to this.

Attendance of next of kin and/or close friends

DIGNITAS encourages and welcomes the attendance of next of kin and/or close friends at an accompanied suicide. In all events, next of kin and/or close friends should be informed as early as possible: they should be told about and given the opportunity to co-operate with decision-making regarding the accompanied suicide. The earlier people become familiar with your choice, the more likely it is that they will support you through it.

Those who do not inform their next of kin and appear to “sneak away” into the beyond run the risk of hurting the feelings of the people closest to them and possibly even making them angry. Their rage might then unjustly be directed against DIGNITAS, despite the fact that this organization strongly advocates the rights of the next of kin and close friends to be present at an accompanied suicide. Having the chance to say goodbye to a loved one can help people to cope much better with their loss and can help to ease any anxieties about the death.

If no next of kin or friends are able or willing to attend the accompanied suicide, DIGNITAS can appoint two people to do so.

DIGNITAS is not allowed to dispense lethal drugs

People sometimes ask whether DIGNITAS can simply make the lethal drug used for accompanied suicides available to them. The short answer is ‘no’. Because the substance is officially listed as a narcotic, its use is regulated. It can be obtained only on production of a prescription written by a physician allowed to practice medicine in Switzerland. In order to ensure a chain of custody the prescription will only be handed over to DIGNITAS, never directly to the patient. Additionally, as far as we know, only very few pharmacies can supply it readily. The Swiss physician who prescribes this drug must not only meet the patient in person but must also, following a request by Zürich’s Chief Medial Officer, “examine” him or her. This means that anyone wanting to undergo an accompanied suicide by DIGNITAS must, without fail, meet the medical doctor who has provided the “provisional green light” previously mentioned.

Moreover, an organization such as DIGNITAS is strictly prohibited from making the drug available to anyone. It is always a member of the DIGNITAS-team who brings the drug, at a predetermined time, to the place where the accompanied suicide is due to take place. Because taking the drug across the border would constitute the criminal offence of smuggling narcotics, we cannot travel abroad carrying it. Handing it over to anyone who then smuggles it would also lead to legal action against DIGNITAS. Additionally, such behaviour might bring about a tightening of the Swiss legislation which would render our activities inside Switzerland more difficult and could even make them impossible.

DIGNITAS has long-standing experience

Founded in 1998, DIGNITAS can look back on quite some years of experience. During this time, DIGNITAS has helped several hundred of its members to a self-determined end of life. The majority of these members came from Germany and Switzerland, while others came from France, the United Kingdom, Austria, Italy, Greece, Israel, the United States and many other countries.

Only a small number the members of DIGNITAS who ask for the preparation of an accompanied suicide actually make use of this option. After having received the “provisional green light”, some ‘let go’ surprisingly soon and pass away naturally, peacefully, at home. Others live on for weeks, months, even years, and cope well with their suffering through having gained a new attitude towards it: they know that there is an “emergency exit door”. This knowledge releases them from the pressure caused by their dilemma, whether to put up with their suffering until the very end or put an end to their suffering by attempting suicide themselves with possibly inadequate methods that entail great risks of failure and further suffering.

In this way, DIGNITAS has a real – and initially barely hoped-for – life-prolong­ing effect.

The most striking example may be the case of a 34 year old man suffering from AIDS. After receiving the “provisional green light” he decided to take the next step and arranged with DIGNITAS to come  to  the  doctors’ consultation. The doctor examined him and issued the prescription to DIGNITAS, after which he retuned home. Some time later he wrote to DIGNITAS, saying that he had had to see a psychiatrist: after his return home he had felt much better and the laboratory results had improved to the extent that he was looking at possibly further years of life – not just the weeks or months he had thought was the case. All this had thrown him into an emotional turmoil which he could not cope with on his own…

People seek help and advice from DIGNITAS for all sorts of reasons. As a result, DIGNITAS’ reaction depends on the individual situation and we always seek the most appropriate solution. It is understood that we very much give prominence to look for solutions towards life, solutions which could make possible carrying on.

Challenges that DIGNITAS deals with

The activities of an association which advocates taking the taboo out of suicide, the right to a self-determined end of life and patients’ rights, are obviously controversial. Some people appreciate such activities and others condemn it, depending on their ideological point of view.

For DIGNITAS, respect for human freedom and every single person’s right to self- determination are of paramount importance.

However, this alone cannot suffice to position such an association. It also involves taking a clear stand on related problems. Therefore, in essence, DIGNITAS is concerned with three issues:

  1. questions about suicide- and suicide-attempt prevention (prophylaxis);
  2. the question of whether certain services should only be available to people resident in Switzerland, or should also be made available to people who live ‘abroad’;
  3. the question of whether people with mental health issues (for example schizo- phrenia or chronic depression) or healthy people who simply decide that they have “lived long enough” should have the right to a risk-free self-determined end of life.

DIGNITAS gives intensive consideration to the question of suicide- and suicide-attempt prevention. The fact that every year in Switzerland up to 66’650 suicide attempts fail – in the UK this number is up to 264’800 – demands that we deal with this issue. Many people injure themselves badly and suffer long-lasting physical and often also mental problems, with severe emotional and financial consequences for themselves, their next-of-kin and friends, and also for the public health system and the economy.

The suicide issue must be freed from the taboo surrounding it and discussed openly. In a similar way to the issue of abortion, an ideal solution will not be readily available. However, it is our duty to search for the best answer to the problem. DIGNITAS always looks for opportunities to help people towards life instead of death.

Regarding the question of accompanied suicide for people resident outside Switzerland, DIGNITAS finds it ethically unacceptable to differentiate between people who are suffering intolerably based on whether they are resident in Switzerland or ‘abroad’. Furthermore, doing so could be seen as an intolerable discrimination and therefore a violation of article 14 of the European Convention on Human Rights (ECHR).

Contrary to a widely-held opinion, people suffering from mental health problems normally have sufficient capacity of discernment to decide whether they would like to continue living or end their life. Therefore, and as a general rule, they are entitled to ask for an accompanied suicide and receive assistance just as much as people suffering from physical health problems, in order to avoid the high risk of failure. The same applies to healthy people who wish to end their life because they feel that it has become too arduous for them due to old age. There are no rational reasons to patronise these people through paternalism.

A word on religious issues

Interestingly, DIGNITAS members very rarely bring up religious questions in connection with accompanied suicide. If anything, such questions are much more likely to be raised in public discussions.

A code of practice for Catholic politicians issued by the Vatican says that one must do one’s utmost to protect life from conception until its natural end. Coincidentally this direction relies on the words of one of the most famous saints of the Catholic church: the holy Thomas More. On October 31st 2000, Pope John Paul II appointed him patron of all statesmen and politicians.

This move is a positive one regarding end-of-life and assisted dying issues: in his famous book “Utopia” – which outlined his view of an ideal society – Thomas More, described how the Utopians treat their sick fellows:

“I have already told you with what care they look after their sick, so that nothing is left undone that can contribute either to their ease or health: and for those who are taken with fixed and incurable diseases, they use all possible ways to cherish them, and to make their lives as comfortable as possible. They vi­sit them often, and take great pains to make their time pass off easily: but when any is taken with a torturing and lingering pain, so that there is no hope, either of recovery or ease, the priests and magistrates come and exhort them, that since they are now unable to go on with the business of life, are become a burden  to  themselves  and  to all about them, and they have really outlived themselves, they should no longer nourish such a rooted distemper, but choose rather to die, since they cannot live but in much misery: being assured, that if they thus deliver themselves from torture, or are willing that others should do it, they shall be happy after death. Since by their acting thus, they lose none of the pleasures but only the troubles of life, they think they behave not only reasonably, but in a manner consistent with religion and piety; because they follow the ad­vice given them by their priests, who are the expounders of the will of God. Such as are wrought on by these persuasions, ei­ther starve themselves of their own accord, or take opium, and by that means die without pain. But no man is forced on this way of ending his life; and if they cannot be persuaded to it, this does not induce them to fail in their attendance and care of them; but as they believe that a vo­luntary death, when it is chosen upon such an authority, is very honourable.”

The former Catholic synod theologian Prof. Dr. Hans Küng, a Swiss who lectured at the University of Tübingen in Germany for decades, emphasized that God gave humans responsibility for their entire lives. Therefore, one may also return this gift of life to the creator if it becomes too arduous.

Terminology and Definitions

Assisted Suicide and Euthanasia are not the same:

Direct active euthanasia on express request (voluntary euthanasia): the person wishing to end his/her own life requests and permits a third person to put an end to his/her life, for example by injection of a lethal drug. This “killing on request” is prohibited in Switzerland (article 114 of the Swiss Penal Code) – however, it is legal under strict guidelines and provided by doctors in Belgium, Luxembourg and The Netherlands, but only for residents.

Direct active euthanasia without express request (non-voluntary euthanasia): this is generally illegal.

Indirect active euthanasia (double effect): the patient receives drugs to lessen the pain and/or distress of his/her suffering at a dosage which unintentionally but not always unavoidably shortens the patient’s life and brings about death earlier. For ex­ample: palliative treatment / terminal sedation of cancer patients. This form of assistance at the end of life is not explicitly regulated by law, yet it is gener­ally acknowledged and widely practiced.

Passive euthanasia (termination of treatment, “to let die”): ending (or not start­ing) life-maintaining and life-prolonging therapies, renouncing treatments, waiv­ing food and drink. This is legal.

Accompaniment of dying patients: any medical support and human aid for the dying, as long as there is no shortening of life. The dying patient is not left alone but cared for, next-of-kin and friends are at his/her side.

Assistance (by physicians or others) with a self-determined end of life: in contrast with the different forms of “euthanasia”, the decision-making process remains with the person who wishes to end his/her own life. The patient decides on the end of his/her life and intentionally brings about his/her own death. In Switzerland, this assistance is legal as long as anyone abetting or helping another person to commit suicide does not have any selfish motives (article 115 of the Swiss Penal Code).

Accompanied suicide: Comprising elements of assistance with a self-determined end of life and accompaniment of dying patients, it most precisely pinpoints what is made possible for members of associations like DIGNITAS, EXIT, etc. The person wishing to put an end to his/her own life commits a carefully prepared and well-thought out suicide and is not left alone but cared for and is accompa­nied, generally in the presence of next-of-kin and friends and usually at his/her home.

Euthanasia: from the Greek, meaning “good, well, death”. As this term may relate to different issues, ranging from help at the end of life and putting down animals to the atrocities of the Nazi regime, it is not precise and should not be used in the context of assisted and accompanied suicide.

Dilemma for Professionals

The dilemma – You are working with a client, Marina, who has heard about Dignitas, the Swiss assisted dying organisation, via a BBC programme (The Report: tinyurl.com/cnr8exs). Marina is in her late 40s and has been diagnosed with early onset Alzheimer’s disease. She has a long-standing anxiety about travelling and would like help from you in managing this so that she can travel to Switzerland and end her life. Marina retains full capacity, and as far as you can tell is not suffering from any diagnosable mental illness apart from anxiety and moderate depression. She insists that you do not disclose any of this to her GP, family or other service workers.

Interest in ethical challenges has become rather fashionable in recent times. November saw live coverage of the Levenson Inquiry into the ethics of the press, and of the trial of Michael Jackson’s doctor Conrad Murray. BBC4 has run a series of programmes with Professor Michael Sandel on moral philosopy, and BBC radio shows such as The Moral Maze and Inside the Ethics Committee also draw good audiences.

For practising psychologists the change in the regulatory landscape, with the introduction of the Health Professions Council, developing effective skills in ethical reasoning and action has become increasingly necessary. As some people have found to their cost, speaking out about unethical practice can be a troubling experience (see www.medicalharm.org), but it is a professional responsibility which we cannot and should not duck.

This new occasional section of The Psychologist will present an ethical dilemma alongside invited commentaries. The aim is to provide some talking points about the issue, which are primarily informed by psychological research. Rather than simply referring readers to the Code of Ethics and Conduct, we hope the commentaries will pick up on the way psychology can help understand why such dilemmas are hard to deal with.

Our first dilemma is fictional, but drawn from a number of different clinical experiences. We hope that future dilemmas will represent and unite all corners of the discipline: do get in touch if you have an idea for a scenario. We welcome feedback on this idea as we look to develop it further, including making use of The Psychologist website to present and encourage a wider range of views.
Tony Wainwright
Chair of the BPS Ethics Committee

Ethically and legally appropriate?
The dilemma in this case is whether it is ethically or legally appropriate for you to give this woman treatment that will facilitate her travelling to Dignitas to seek assisted suicide. Looking first at the legal position in the UK, committing suicide is no longer unlawful, but under the Suicide Act of 1961 encouraging or assisting suicide is a serious criminal offence, punishable by up to 14 years in prison.

In 2009 Debbie Purdy succeeded in her House of Lords appeal, forcing the Director of Public Prosecutions to clarify whether someone who assists suicide, for example, by accompanying a loved one to Switzerland, is committing an offence under UK law. The DPP’s guidance (see tinyurl.com/y7jvl3d) sets out factors for and against prosecution. Whereas the guidance provides some comfort for relatives supporting a loved one seeking assisted suicide, it specifically states a prosecution is more likely to be required if a person is acting in their capacity as a medical doctor or other health professional. Thus, providing the patient with this support in your professional capacity is highly risky. You might argue that you are merely treating the patient for anxiety regarding travel, which might be considered minimal in terms of assistance, but is this disingenuous, given that she has confided in you why she wants to overcome her fear of travelling.

An additional factor tending in favour of prosecution is where the patient lacks capacity under the Mental Capacity Act 2008. Although we are told that the patient retains capacity, the combination of early onset Alzheimer’s, together with her anxiety and depression, at the very least raises concerns as to her capacity, which might add to a decision to prosecute.

Ethically, your involvement in this case is likely to be influenced by your own personal views about the morality of assisted death. You may feel that assisted suicide is the ultimate beneficent act which respects a patient’s autonomy. Alternatively, you may feel that assisting suicide constitutes the ultimate harming of a patient. Most probably, you may have considerable sympathy for your patient’s plight, whilst rightly having professional and personal moral concerns about doing what she asks of you.

As a reflective practitioner, you will consider all the factors for and against complying with her request, in order to arrive at the most ethically acceptable course of action (which might, in the circumstances, be the ‘least worst’ option). You will also be mindful to take into account the BPS’s Code of Ethics (www.bps.org.uk/ethics). As a responsible clinician, you would doubtless want to benefit your patient, although this does not mean acceding to any and every patient request, particularly where the request clashes with your own values, or the request is to do something unlawful. You may wish to consider other ways that could benefit your patient in the difficult situation she finds herself in, for example by treating the depression (which may or may not be related to her diagnosis) or by signposting her to avenues of support.

There is an additional ethical concern around the patient’s insistence that you do not disclose her request to her GP, family or other service workers. Ordinarily, you should not breach the confidences of an apparently competent adult patient. However, given that her mental capacity is in question, and she is evincing a desire to self-harm, you may feel justified in seeking to persuade her to share her plans with others, or, ultimately, in breaching her confidentiality if you feel this to be required in her best interests. It would certainly be harder to respect her wish for you to keep this information from her GP and other health professionals if you were providing therapy in primary care and working as part of a multidisciplinary team.

Ultimately, you must take responsibility for weighing up these various factors to arrive at a justifiable course of action. But for the reasons I have set out, acceding to this patient’s request would expose you professionally and legally, and you would be well advised to seek advice from your professional body and professional indemnity insurers and to look for other ways to benefit this patient.
Julie Stone
Associate Lecturer
Peninsula Medical School


Further information – A selection for those interested


Further associations in Switzerland and around the world








Suicide and suicide-attempt prevention






Patient’s Rights, Living Wills and Humanism






“Euthanasia and law in Europe“

The book with an in-depth description of the legal situation in Europe by J. Griffiths, H. Weyers and M. Adams. ISBN 978-1-84113-700-1


“To Die Well: Your Right to Comfort, Calm, and Choice in the Last Days of Life”

“Brings needed hope and comfort to those who are near death and to those who attend the dying and are responsible for ensuring that a good death is possi-ble. The book will appeal to patients, their families, and their caregivers. A fascinating book, rich with clinical sto-ries. Gently and compassionately writ-ten” (Journal of the American Medical Association). By Sidney Wanzer and Joseph Glen-mullen, Da Capo Press, ISBN 978-0738211633



“The Suicide Tourist”

Oscar®-winning Director John Zaritsky’s empathetic documentary on the right to choose time and place of one’s own end of life.




“When a loved one wants to die”, in ‘The Irish Times’, article online:




Information on the costs associated with an accompanied suicide with DIGNITAS

1) Preparation of an accompanied suicide

Several significant administrative expenses are incurred by DIGNITAS when making the arrangements for an accompanied suicide until the “provisional green light” is given (i.e. a medical doctor gives basically approval to a member’s request for a prescription, yet re­serves his or her definite decision until a per­sonal consultation). Based on the DIGNITAS statutes, members are asked to pay an additional contribution of 4’000 Swiss Francs, which must be settled in advance. However, no guarantee of an accompanied suicide can be linked to this payment.

2) Doctor’s consultation

Further costs will be incurred because a Swiss medical doctor who co-operates with DIGNITAS must be involved to meet a member and subsequently write the prescription for the drug. Two extended consultations with the physician and related administrative charges cost an additional contribution of 1’000 Swiss Francs.

3) Costs for completing an accompanied suicide

Costs (such as the fee paid to the person acting as an escort/helper, a contribution towards the cost of the DIGNITAS apartment and so on) are also incurred by DIGNITAS. In order to cover these costs and to maintain the quality of this service, DIGNITAS is compelled to ask for a further contribution of 2’500 Swiss Francs for the completion of an accompanied suicide.

4) Funeral and registry office expenses

If a person dies in a DIGNITAS apartment in Switzerland rather than in their own home the charges levied by funeral directors are higher. Cremation in Switzerland is generally recommended and the urn containing the ashes can be sent on without difficulty.

The costs for the services of the funeral director including a cremation normally come to 2’500 Swiss Francs, including charges payable to the relevant Swiss authorities and the cost of despatching the urn.

On request, DIGNITAS can also take care of the official procedures following a death in Switzerland. This separate service incurs an additional contribution of 500 Swiss Francs, to cover expenses.

Upon agreeing on a date for an accompanied suicide, the member will receive a pro-forma invoice detailing the additional payments he or she is required to make. An accompanied suicide can only be completed if DIGNITAS is confident that all of the costs and expenses incurred will be met. Consequently, DIGNITAS normally requires advance payment. The total payable is 10’500 Swiss Francs if DIGNITAS is asked to make all the necessary funeral and administrative arrangements; or 7’500 Swiss Francs if DIGNITAS is not required to take care of the funeral or admini­stra­tive/official affairs.
In all costs V.A.T. not included. All costs subject to change.

Therefore, in the interest of proper accounting procedures, members are invoiced accordingly for these separate services and the invoices must normally be settled in advance.

The DIGNITAS statutes make provision for a reduction of (or even complete exemption from) membership fees for members who live under modest economic circumstances: this provision also applies to the additional contributions associated with preparing and completing an accompanied suicide. However, it is essential that any reduction of or exemption from contributions is discussed and agreed beforehand between the member and DIGNITAS.

Ava Butler Shares Husband’s Diagnosis of Parkinson’s and Lewy Body Dementia

Information Dementia

Ava Butler, a member of The Michael J. Fox Foundation community, shares what her husband’s diagnosis of Parkinson’s disease and Lewy body dementia has taught her — which she takes to heart at home, and in her career.

Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder.

Lewy body dementia a progressive neurodegenerative dementia closely associated with Parkinson’s disease. My dear husband, Richard has both. (Editor’s note: LBD is a progressive neurodegenerative dementia that is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease, too. While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having Parkinson’s increases your risk.)

Persistent and recurring visual hallucinations are often an early symptom of LBD. This was true for Richard. Not all LBD hallucinations are fear based, but Richard’s were. His ability to communicate clearly has been impacted and sometimes words come out in an unusual and poetic way.

Between 2013 and 2014 I documented, as clearly as I could, exactly what Richard told me he saw. I share what he told me as a way of providing insight to those whose lives are also impacted by LBD. Here are examples of what Richard has experienced as written from his own words:

Occasionally people come in the house at night, but they go away when we turn on the lights and look around for them.

The plants on the south balcony turned into little children again. Today they are musicians and they played for everyone down below. People danced to their music.

Today Richard has forgotten my name. He thinks it’s James Stephen Ping, his brother’s name. Then he calls me Damaged Portilla. He forgot his name too. “My name? How would I ever know that?” he says baffled by the thought of it.

“You’re making this up,” I say. “No,” says Richard, “that would be immature.”

At the time, we knew he had Parkinson’s, but knew nothing about LBD. At first, the hallucinations and dementia were far more difficult to manage than his physical symptoms. Now that his disease has progressed, his hallucinations have become more manageable and less frequent. But LBD remains our biggest challenge.

When Richard is having hallucinations, I:

  • Respect what he sees. Dismissing his reality is not helpful, and can actually make it appear that I am not trustworthy.
  • Remind him that we are safe, and that everyone is on our side
  • Ask him to look in my eyes. This can help ground him. Remind him that I love him and secure. However, if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him space.
  • Ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insights into how he is feeling. Anxiety produces scary hallucinations. If he is calm and secure, the hallucinations tend to be positive.
  • Improvise to turn the negative situation into one with a positive outcome. For example, “It first looked like it was a bad guy, but he’s actually very friendly and on our side,” or “I saw that guy before and he’s harmless and is actually here to help keep us safe.”
  • Tell him that he can instruct the people to leave him alone.
  • Walk slowly towards the hallucination and tell the people it time for them to go away now.
  • Move and talk slowly and calmly. Fast movements cause higher anxiety.
  • Be mindful of my own emotions. My own frustration, anger or stress will make things worse.

Ava Butler

Dementia Help Support Experiences Stories Tips Information Sharing Website

Dementia Info

Please send us your experience, and your stories and tips for those caring for their own loved ones with any kind of dementia in the present, or for those just setting out on the long journey ahead.

We will publish your stories for others to read who themselves may find comfort, help, hope and support from your own experience and journey.

We will not publish any personal information and you can send your experiences, tips and stories to us anonymously if you so wish to do so and your email address will always remain private no matter what you include in your contribution.

Please click here for any contribution you may wish to add.

There are over 100 diseases that may cause dementia.

The most common causes of dementia include Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.

We will also publish your contributions covering Parkinson’s disease and any form of dementia that you feel may benefit us to publish for the help and support of others.

The Shocking Truth Of Dementia Experience Caring Loving Coping Surviving

Dementia Help Support

As with many Alzheimer’s patients, it was the family who suggested my mother get her memory tested.

She was 68 years old, repeating herself, losing things and occasionally paranoid and combative with my father, something we had never seen from her before.

We thought she might be depressed, but the notion that she might have dementia crossed our minds. She was diagnosed with mild cognitive impairment, the earliest stage of forgetfulness, in 2008, but was not officially given the diagnosis of Alzheimer’s until 2010, when she had an epileptic seizure. After that, her memory and cognitive faculties deteriorated sharply.

This is not the story of an Alzheimer’s patient swinging between the ignorance of their forgetfulness and the panic of watching their own ongoing decline come into focus, nor the story of the fear, the bouts of irritability, and the deep sorrow felt by family members watching their loved one slowly disappear before their eyes.

We went through all that, yes. But this is the story of the last three excruciating months of my mother’s life. She died in her family’s arms at the age of 76, having battled Alzheimer’s bravely for more than eight years.

The author, second from left, with her family in February 2017.

What does it mean for a person to die from Alzheimer’s? Alzheimer’s is a terminal illness. Like many family members of the newly diagnosed, I researched the various stages of Alzheimer’s, as well as the experience of patients and caregivers. I wanted to know what to expect. I knew that complications might occur—pneumonia, weakened immune system, blood clots—that might be attributed as the trigger of the end. What I couldn’t find is how someone dies from Alzheimer’s. What do those complications look like in an Alzheimer’s patient? What does it mean for the patient and their family? I never found an answer until I watched it for myself.


The author with her mother in 2016.

I realized my mother had reached end-stage Alzheimer’s in mid-March 2017 when I went to visit her. Just the month before, she was able to join us to celebrate my younger sister’s wedding in Amsterdam. But even then, it was clear that she had gotten worse rather quickly. We had moved her into a care home one and a half years before, and she had settled in as well as could be expected, progressing slowly down the curve of Alzheimer’s. She had been in stage 6—characterized by confusion, personality changes, and the need for supervision—for a while, and we thought she would remain in this stage for another few years at least, as she was physically fit and engaging with others. But while she was still able to walk, we noticed that she was having difficulty figuring out how to walk up the stairs and getting in and out of the car was almost impossible for her. It looked like she couldn’t figure out what she had to do—which leg needed to go where. She had picked up a very distracting tick—clapping with her hands to a rhythm only she knew in her head. At my sister’s wedding, my father and I had to hold her hands to stop her from clapping. If we held just one hand, she would start tapping the same rhythm on her leg with the other. This repetitive tick would become worse, where she would end up hitting her head quite hard with the repetitive clapping rhythm. We never could figure out why she would do it. “Part of the disease” was what we were told by doctors. It was part of the disease that meant she was no longer welcome in the main living room of her care home, because it annoyed the other patients, and she was relegated to spending hours alone in her own room. I walked in once to watch her sitting there alone in her chair, staring blankly out the window and hitting her cheek, her forehead, her hair, then her hands with this maddening clapping rhythm. And she was hitting herself hard—to the point that it must have hurt, but she didn’t seem to notice or mind. It was gut-wrenching to witness.

My mother was a gifted piano player. She was self-taught and could play any piece of music you put in front of her. This gift is what helped her through many long weeks, months and the final year of her disease. She could play for hours on end, and even when she had forgotten the faces and names of all her friends, long after the passing of time had become meaningless to her, she could still read the music and play. But in February that stopped. When the care home nurses led her to the piano, she stared at it blankly, put her hands on the keys, and stopped and then stared off into space, disinterested in the thing that had given her so much joy her whole life. The caregivers surmised that maybe she felt frustration or embarrassment that she couldn’t figure out how to play anymore.

“When the care home nurses led her to the piano, she stared at it blankly, put her hands on the keys, and stopped and then stared off into space, disinterested in the thing that had given her so much joy her whole life.”

They say the disease takes a big downward step and then stabilizes, but that those periods of stability get shorter and shorter. That was the case in February. When we would come visit, her face would light up – “Hi, Poepie,” she would say to me, even when she had lost all her other words. But one day in late February, my sister found her sitting alone in her room, staring vacantly and unresponsive. Nothing my sister did elicited a response. It was the first wakeup call of many for us. The next day, it was back to normal.  My mother was her old—albeit post-Alzheimer’s—self, smiling and responding with yes, no, nods and shakes of the head.

Read Next: The Alzheimer’s Advice I Would Give My Past Self

By the end of March, after a few more of these vacant staring episodes, she had lost the ability to walk—no amount of tugging or pulling could get her to stand up, and she was visibly afraid of taking steps. With the lack of mobility came the bed sores. In the case of my mother, they manifested as very large blisters on her heels—so large the blisters covered half her foot. Why was she getting blisters there? No one could answer—maybe she was rubbing her feet up and down the mattress at night because she was uncomfortable. She had lost the ability or the know-how of turning over. Even now, I still cringe to think of her rubbing her feet in her anguish, alone in the dark. I pleaded with the nurses to give her something to sleep better at night.

The blisters didn’t heal, and then an old bruise on her leg opened up and started bleeding and crusting over. It was due to poor blood circulation, made worse by the fact that she was having trouble eating and her protein intake was too low, exacerbating the fluid build-up in the blisters. And then she stopped being able to swallow her medicine; no antibiotics to help heal the wounds on her heels and legs, no paracetamol to ease the discomfort, not even a relaxant to help her sleep at night.

I didn’t know it then, but we finally encountered the real killer with Alzheimer’s—forgetting how to swallow.


In late March I found her still sitting at the dining table two hours after the meal, staring at her bowl of fruit. The nurses said she had become a slow eater. I realized at that point that the suddenness of my mother’s spiral had even surprised the staff. They didn’t realize the blisters were from bedsores, thinking her shoes were too tight; they didn’t help her to eat, thinking she was taking her time. It was the disease, slowly shrivelling the part of her brain that takes care of the physical processes and basic functions.

It was the swallowing, or lack thereof, that was the beginning of the end. She would chew her food for hours, forgetting what to do with the food in her mouth. So, the nurses moved her to liquid shakes, or thickened her water to make it easier to swallow, and started giving her water and juice in sippy cups.  She hated those—even in her advanced state, she refused those pastel, toddler sippy cups. I could get her to take one or two sips of water from a normal glass, but her eyes would go dark when I tried with a sippy cup. I clung to that. She may have been in the grips of the last stages, but by gosh, she wasn’t going to lose what shred of dignity she still had by drinking from a plastic pink sippy cup!

One day she just stopped eating and drinking completely. Not only does Alzheimer’s make you forget how to swallow, but it also attacks the part of the brain that sends thirst and hunger pangs. And that’s when I understood what would kill her—she would slowly wither away, dry up, unable and unwilling to eat or drink.

By April, she was mostly bed-ridden, requiring a special sling-lift to lift her onto her wheelchair, to change her adult diapers, to wash and clean her, to change her clothes. She always tensed up when they started putting her in the sling-lift, obviously embarrassed in front of the caregivers. Why is Alzheimer’s so cruel to steal memories and awareness, but leave the emotions?

By then, I started to wonder how long this would go on.  She was awake, tapping away to that incessant rhythm in her head, sometimes responding, mostly staring away vacantly. How long could someone go without eating and drinking? She had lost a lot of weight, her cheekbones becoming more prominent. Looking into her eyes, I couldn’t find my mother anymore, just dark, grey-colored eyes.

We were there constantly the last week of April, coming every day, going home exhausted at night. I postponed my plans to go home; my sister took time off work. Nobody could tell us when, but said if she didn’t eat and drink, it would go quickly. How quickly? Weeks or days, they said.

Watch our talk “The Last Stage of Alzheimer’s: What You Need to Know” with Jasja Kotterman and Dr. Liz Sampson of University College London:

[embedyt] https://www.youtube.com/watch?v=yvfWGa0MDf8%5B/embedyt%5D

And then one day, the spell broke. She was hungry and thirsty, and drank and even ate and chewed, slowly, but with relish. And we gave her as much as we dared without causing her to choke. The doctor told us we would have many more months with her if she kept eating. It was a relief to hear this, and we had a few good days—so good that I planned to go back home, my sister made plans to head back to work, and my father planned to visit friends in France. We would keep in touch and be ready to come back as soon as things got worse again.

But worse came the following day. The doctor called saying my mother had developed a lung infection. She must have choked on something on one of the good days, some water, some food had entered her lungs and triggered a lung infection.

She was gurgling when we came, a horrible gurgling cough that I knew well from my premature babies, sick with yet another horrible cold—lungs filled with mucus they were unable to clear because they were too young to cough well, and their airways too narrow. My mother couldn’t clear her cough, either, because she had forgotten how to cough, forgotten that coughing would clear the airways, that it was important to spit or swallow the phlegm. Instead, she sputtered. It was distressing to see her like this, and we asked, like we always did, “Are you in pain?” For the first time in the eight years that she battled the disease, she nodded yes, yes.

It all moved quickly in slow motion from there. We had made the decision as a family to forgo hospital intervention to treat infections or provide fluids. No IV drips, no feeding tubes, no ventilators. As a terminal disease, that could postpone her life a few weeks, but not really improve the quality of those last weeks, and we knew she would never have wanted that. We took the doctor’s advice to start the morphine drip to keep her comfortable.

In hindsight, I didn’t really understand what that meant. I didn’t understand that when she closed her eyes to nap that afternoon, that she would never open them again. I didn’t understand that when she still did a slow tap-tap-tap on her head, it would be the last time she would move. Either I misunderstood the doctor, or I didn’t want to understand the doctor—I thought she would be comfortable, without pain, but still awake. I thought she would still be able to see us and hear us. And maybe she did know we were there, but from that point on, she was not conscious anymore.


We kept vigil for three days and nights, all three of us sleeping in her bedroom. The first night was awful–listening to her struggling to breathe and powerless to help her. The following morning, her temperature spiked and her heart rate rose to 140.  That heart rate stayed high until the very end, but her temperature varied, from high fever to chilled cold hands. Her body was losing liquids, and so her heart had to pump faster to move the blood. “The body is fighting the infection,” said the doctor. “Maybe she will recover on her own.” False hope, but I can’t blame the doctor for not knowing what would happen.

By the second night, she seemed to be breathing better. We spent the day with her, talking to her, lying down next to her. We combed her hair, put on makeup. The nurses had decided not to change her anymore – the diaper was dry, it wasn’t necessary, and it was better not to disturb her. “Let her go gently,” the nurse said, “the less the living interfere, the easier it will be for her to separate and move on from life.” Surprisingly comforting words.

My mother’s mouth was open and slack, like when you fall asleep in an airplane, with your mouth hanging open. Morphine, apparently, makes all muscles relax, including the jaw–there was nothing to be done about it. I knew my mother would hate looking like that, so I put lipstick on her to make her look as pretty as possible. We used lemon infused Q-tips soaked in water to moisten her mouth, keeping her lips and breath as fresh as possible.

I look back at those three days and feel good about them. It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days. We spent a lot of time discussing preparation for her funeral. It felt weird to do that in front of her, so we involved her in the conversation. Would she want this music, or that flower? We napped, we drank lots of tea and ate our meals in the room. The nurses were clearly used to this, and brought us our meals, and everyone gave us sad smiles as we walked the halls.

It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days.

The doctor came in that Friday morning, and said it would probably be a matter of days. “Wait,” I said, “I thought she was fighting an infection, and might recover?” It is amazing how strongly we want to avoid the end. I just held onto the words of hope but prepared myself. When would she pass away? We didn’t dare leave the room, in case she took her last breath at that moment. It happens, the doctor said—the loved one goes to the bathroom and comes back, and the patient is gone. We were determined not to let my mother leave this world alone.

I asked how she was going to die. What would cause the heart to stop? After so many days of not eating and drinking, there was no fluid left to go through her kidneys. Her kidneys would stop working, and the toxins would build up. The lung infection would seep into the neighboring tissues, and there would be widespread infection and septicemia. Eventually the toxins would reach a level that would impact the brain, combined with the fact that there was less oxygen entering her bloodstream and more carbon dioxide building up. All of these would eventually stop her breathing and her heart would slow to a halt. I regretted asking for the details—I didn’t want to think of the slow poisoning that was going on in my mother’s body. I was just thankful for that morphine drip and how she seemed unaware of the dying process.


That afternoon at 4 p.m., my sister had to go pick up her husband from the train station. I lay down next to my mother and dozed off next to her for a while. An hour after my sister left, it dawned on me that my mother had stopped breathing. I listened and put my fingers on her pulse. Her heart was still beating strong and fast. And I realized, this was it, this was the moment … but my sister wasn’t there. “Quick,” I told my father, “come here and hold mom’s hand.” I messaged my sister. I begged my mother to please keep breathing and wait for my sister. It seemed like eons, but she did, she took another breath, and then one more, and I felt her pulse slowing, and then my sister rushed through the door, grabbed my mother’s hand, and my mother’s heart took its last beat.

My mother died at 5:05 p.m. on the fifth day of the fifth month of 2017. She died in the arms of her family, peacefully and in beauty.

Even though I researched what I could about how the disease would ultimately end, I was still surprised by what happened. I learned that it is a disease, one that kills; it isn’t old age that kills, it is the disease shriveling the brain and the important parts of the body that keep it functioning.

I learned that there is a silver lining to the disease. By the end, the patient is unaware of their condition, unaware that they will die from it. Not like a cancer patient, that is fully aware of the terminal nature of their disease until the end. An Alzheimer’s patient isn’t aware and that is a blessing.

I learned that I was lucky to have a long time to say my goodbyes and thank yous and I love yous to my mother.

I learned that we grieve for so long for the disappearing loved one—I have cried buckets of tears over the last few years—so that in the last few months, weeks and days, saying goodbye is not that painful. And that is the one good thing about Alzheimer’s, it makes saying goodbye at the end easier for the family and for the patient.

Jasja De Smedt Kotterman

Jasja is Dutch-Argentinian living in Hong Kong with her twin boys and Dutch husband. She grew up in South America, but considers Holland home. Her mother, Ada, left Holland when she was 21 to teach in Venezuela, met her Belgian husband there, and together with him continued living an international life. She did not return to Holland until Alzheimer’s took away all her languages except her mother tongue, Dutch. She lived the last two years of her life in a care home in Holland. Jasja would fly back and forth to Holland three to four times per year to spend time with her mother. Jasja’s sister lives in Amsterdam and would visit their mother on a weekly basis, and was the main point of contact for the care home. Ada’s husband remained living in Uruguay, but would spend months at a time in Holland to be with his wife during her last two years.

Dementia Shocking New Discovery Information Research Presentation

Dementia Research

Are Lewy bodies fake news?


One of the cardinal features of the Parkinsonian brain are dense, circular clusters of protein that we call ‘Lewy bodies’.

But what exactly are these Lewy bodies?

How do they form?

And what function do they serve?

More importantly: Are they part of the problem – helping to cause of Parkinson’s? Or are they a desperate attempt by a sick cell to save itself?

In today’s post, we will have a look at new research that makes a very close inspection of Lewy bodies and finds some interesting new details that might tell us something about Parkinson’s.

Neuropathologists conducting a gross examination of a brain. Source: NBC

A definitive diagnosis of Parkinson’s disease can only be made at the postmortem stage with an examination of the brain. Until that moment, all cases of Parkinson’s disease are ‘suspected’.

When a neuropathologist makes an examination of the brain of a person who passed away with the clinical features of Parkinson’s, there are two characteristic hallmarks that they will be looking for in order to provide a final diagnosis of the condition:

1.  The loss of specific populations of cells in the brain, such as the dopamine producing neurons in a region called the substantia nigra, which lies in an area called the midbrain (at the base of the brain/top of the brain stem).


The dark pigmented dopamine neurons in the substantia nigra are reduced in the Parkinson’s disease brain (right). Source:Memorangapp

2.  Dense, circular clusters (or aggregates) of protein within cells, which are called Lewy bodies.


A cartoon of a neuron, with the Lewy body indicated within the cell body. Source: Alzheimer’s news

What is a Lewy body?

A Lewy body is referred to as a cellular inclusion (that is, ‘a thing that is included within a whole’), as they are almost always found inside the cell body. They generally measure between 5–25 microns in diameter (5 microns is 0.005 mm) thus they are tiny, but when compared to the neuron within which they reside they are rather large (neurons usually measures 40-100 microns in diameter).

A photo of a Lewy body inside of a neuron. Source: Neuropathology-web

How do Lewy bodies form? And what is their function?

The short answer to these questions is:

Source: Wellbeing365

The longer answer is: Our understanding of how Lewy bodies are formed – and their actual role in neurodegenerative conditions like Parkinson’s – is extremely limited. No one has ever observed one forming. Lewy bodies are very difficult to generate in the lab under experimental conditions. And as for their function, this is the source of much guess work and serious debate (we’ll come back to this topic later in this post).

Ok, but what are Lewy bodies actually made of?

Most websites describing with Parkinson’s disease will tell you that Lewy bodies are made up of a protein called alpha synuclein, and this is partly true.

Over the years quite a few researcher have had a close look at the contents of Lewy bodies, including the man after whom they are named.

In 1912, just two years out of medical school and in his first year as Director of the Neuropsychiatric Laboratory at the University of Breslau Medical School, neuropathologist Friedrich Lewy published his findings from analysing postmortem sections of brain from people who passed away with Parkinson’s.

Friedrich Lewy. Source: Lewy Body Society

Based on the examination of 25 patients with Parkinson’s, Lewy had observed disease-specific features in a region of the brain called the dorsal nucleus of the vagus nerve (he didn’t look at the substantia nigra). The dorsal nucleus of the vagus nerve is a collection of cells that resides in the brain stem (at the base of the brain) and it receives signals from the heart, lungs and stomach.

Source: oerpub.github

Lewy reported that a ‘large number‘ of the samples from patients with Parkinson’s who showed ‘tremor and tension of their vocal cords‘, displayed small, dense circular objects inside the cells of the dorsal nucleus of the vagus nerve. He had not found any of these same features in six cases of ‘severely senile or arteriosclerotic‘ patients.

These objects were later called “Lewy bodies” (named by Konstantin Tretiakoff in 1919 – Source).


A lewy body (stained brown, indicated with a black arrow) inside a cell. Source: Cure Dementia

As I have previously mentioned (Click here to read that post), in 1931, Friedrich Lewy presented his research at the International Congress of Neurology in Bern. During that talk he noted the similarities between the circular inclusions (called ‘Negri bodies’) in the brains of people who suffered from rabies and his own Lewy bodies.


A Negri body in a cell affected by rabies (arrow). Source: Nethealthbook

Given the similarities, Lewy proposed a viral cause for Parkinson’s disease. Whether viruses play a role in the development of Parkinson’s is yet to be determined, but Lewy’s initial conclusion was based on the microscopy technology that he had available to him at the time of his research.

Since then there has been a wee bit of progress in our ability to look at the microscopic world. For example, back in 2009 the technology company IBM took these images of pentacene molecules:

Source: Singularityhub

The minute scale of this image is STUNNING. Understand that the scale bar in the bottom left-hand corner of both images is provided in Angstroms. An angstroms is 10−10 m (that is one ten-billionth of a metre or 0.1 nanometre).

How wide is a nanometre?

Not very. A sheet of paper is about 100,000 nanometers thick. So the molecules in the images above are very, very, very,….(insert lots of verys here)….very small.

And using these advances in microscopy technology, we have been able to have a closer look at Lewy bodies. The first indepth analyses came in the 1960’s when electron microscopes were first pointed at sections of brain tissue from Parkinsonian brains. This resulted in research reports such as:

Title: Phase and Electron Microscopic Observations of Lewy Bodies and Melanin Granules in the Substantia Nigra and Locus Caeruleus in Parkinson’s Disease
Authors: Duffy PE & Tennyson VM
Journal: Journal of Neuropathology Experimental Neurology, 24 (3) 1 July 1965, 398–414

In this first high magnification study, the researchers described Lewy bodies as a circular bodies with densely packed centre (or core), surrounded by radiating fibres (or filaments). There was no obvious confining membrane. This first description has been confirmed by numerous follow up studies, and has long remained the primary description of the structure of Lewy bodies.

In the image below, you can see the densely packed core of a Lewy body (labelled with a small white ‘C’) and the radiating filaments in the ‘helo’ around the periphry (labelled with a hard to see white ‘H’ on the left of centre of the image):

A very high magnification image of a Lewy body. Source: Lancet

And these initial observations were quickly replicated and extended by other research groups at the time:

Title: Ultrastructural observations in Parkinsonism.
Authors: Roy S, Wolman L.
Journal: J Pathol. 1969 Sep;99(1):39-44.
PMID: 5359222

In this study, when the researchers had a close look at Lewy bodies in sections of brain from people with Parkinson’s, they proposed two different types of Lewy body:

  1. A more common variety (similar to what Duffy & Tennyson had previously described), composed of granular material in the core of the Lewy body, while thread-like fibers (called fibrils) radiate around the periphery. This is considered a ‘classical’ type  of Lewy body.
  2. The second type of Lewy body was composed almost entirely of circular fibrils. This feature gave this kind of Lewy body the appearance of a uniform density. This is considered a ‘cortical’ type  of Lewy body, as these are mainly found in cortical regions of the brain.

More recently, researchers have been able to stain Lewy bodies using reagents for particular proteins and this have provided evidence of specific localisation of those proteins. For example, Parkinson’s associated proteins like alpha synuclein and SOD1appear to be present in the periphery of the Lewy body, as opposed to another Parkinson’s associated protein, Ubiquitin, which is mainly present in the core of Lewy bodies (see image below).


And using different staining techniques at least 90 different molecules have been found in Lewy bodies, so it is wrong to think of them as simply aggregates of alpha synuclein (Source).

Until recently, however, a combination of all of the various microscopic techniques had not been conducted, and this brings us to the research report that this post is going to review.


Recently this research report was posted on the preprint website BioRxiv:

Title: Lewy pathology in Parkinson’s disease consists of a crowded organellar membranous medley
Authors: Shahmoradian SH, Genoud C, Graff-Meyer A, Hench J, Moors T, Schweighauser G, Wang J, Goldie KN, Sütterlin R, Castaño-Díez D, Pérez-Navarro P, Huisman E, Ipsen S, Ingrassia A, de Gier Y, Rozemuller AJM, De Paepe A, Erny J, Staempfli A, Hoernschemeyer J, Großerüschkamp F, Niedieker D, El-Mashtoly SF, Quadri M, van IJcken WFJBonifati V, Gerwert K, Bohrmann B, Frank S, Britschgi M, Stahlberg H, van de Berg WDJ, Lauer ME
Journal: bioRxiv preprint first posted online May. 16, 2017
PMID: N/A                        (This article is OPEN ACCESS if you would like to read it)

In this study, the researchers took sections of postmortem substantia nigra (the region of the brain where the dopamine neurons reside (see the top of this post) and hippocampus – a region of the brain involved in memory formation – and examined them using a range of complementary methods in order to study Lewy bodies at the nanometer scale. Before beginning, the investigators checked to see if the individuals – from whom the samples had been collected – had any known Parkinson’s-associated genetic variants. They found none and so these specimens were coming from what can be considered spontaneous (or idiopathic) Parkinson’s.

What they found was fascinating.

Using multiple microscopic imaging techniques, the investigators discovered that the interior of Lewy bodies is actually a crowded mess of membranes from vesicles (the bags in which proteins are transported around cells – the aqua blue arrows in the image below), old & deformed mitochondria (the power stations of the cells – the orange arrows in the image below) and disrupted structural elements of the cells (various proteins). This was in complete contrast to the expected filaments.

High magnification image of a Lewy body. Source: Biorxiv

The deformed mitochondria were found to be present around the periphery of the Lewy body, while the vesicles were largely present in the middle of the inclusions. And this finding was also in opposition to previous research which found vesicles crowded around the edge of Lewy bodies:

Title: Dense core vesicles around the Lewy body in incidental Parkinson’s disease: an electron microscopic study
Authors: Watanabe I, Vachal E, Tomita T.
Journal: Acta Neuropathol. 1977 Aug 16;39(2):173-5.
PMID: 197775

In this study, the researchers described an individual postmortem case of Lewy body disease in which numerous dense circular bags (called vesicles) were found to be particularly numerous in the vicinity of the Lewy bodies in cells in the locus coeruleus – an area of the brain stem that is affected by Parkinson’s. They actually speculated on whether this phenomenon could be occurring at the early stage of Lewy body production – which may explain the differences observed between studies (NOTE: these studies are based on a small number of brains being analysed, and these brains could be at different stage of their respective conditions).

But the results of this new ‘un-published’ bioRxiv research report point towards possible origins of Lewy bodies. And given the results of their study, the researchers have proposed a five step model of how Lewy bodies may be forming (see the image below):

Step A: Organelles within a cell are performing their normal functions and all is well. An organelle is any tiny cellular structure that performs specific functions within a cell, including mitochondria.

Step B: Somehow there is the introduction of aggregated or toxic alpha synuclein, along with other proteins that have a tendency to cluster and aggregate. And these introduced proteins start to mingle with all of the organelles.

Step C: These introduced, trouble making proteins next begin to disrupt the membranes of some of the organelles, causing them to spill open and debris start to pile up in the immediate vicinity.

Step D:  The debris from the disrupted and fragmented membranes of organelles accelerates the aggregation.

Step E: Larger clumps of these membrane fragments, aggregated proteins, and vesicles begin to compact over time in the extremely restricted space of the cell, and this gives rise to the basic structure of Lewy bodies.

A model of Lewy body formation. Source: Biorxiv

The investigators concluded that their findings point toward impaired trafficking of organelles as a key driver of the development of Parkinson’s disease.

Ok. So that’s Parkinson’s all sorted out then?

Yeeeeah, no.

Unfortunately not.

While the results of this new study are extremely interesting, there is still something critical missing from the picture. You see, when we inject cells with high levels of toxic alpha synuclein and other ‘sticky’ proteins, they don’t form Lewy bodies. And when we replicate those experiments in mice, they don’t form Lewy bodies.

So what mystery component is missing that we can’t experimentally produce a Lewy body? (Answer that question and I’ll give you a Nobel prize).

It’s an interesting study, but why has it not yet been published in a peer-reviewed journal?

Who knows.

Welcome to the world of academic research. Publication of data can easily take 6-12 months of back-and-forth between researchers and anonymous reviewers. It is unfortunately a slow process.

Source: PhDcomics

And to give you an idea of how slow the current process of publishing research is: this unpublished manuscript that we have discussed here today, has already been cited by two recently published articles.

How crazy is that?!?

But are Lewy bodies dangerous?

This is the big unanswered question.

Initially there were a number of research reports that looked at the number of Lewy bodies in postmortem brains of people who passed away with Parkinson’s. Those studies indicated that the number of Lewy bodies in patients with mild to moderate cell loss in the substantia nigra was higher than in patients with severe neuronal depletion. This observation has led to the assumption that Lewy body-containing neurons are dying cells, and that Lewy bodies were obviously dangerous.

But this idea has subsequently been challenged.

And that challenge probably started with this report:

Title: Contribution of somal Lewy bodies to neuronal death
Authors: Tompkins MM, Hill WD
Journal: Brain Res. 1997 Nov 14;775(1-2):24-9
PMID: 9439824

In this study, the researchers wanted to determine if signs of cell death were more common in dopamine neurons that contained Lewy bodies than dopamine neurons without Lewy bodies. They had previously perfected a staining protocol that allowed them to identify cells in the early stages of apoptosis (or programmed cell death), and they now wanted to use that protocol to assess the role of Lewy bodies.

They stained sections of brain from four postmortem cases (2 cases of Alzheimer’s/Parkinson’s and 2 cases of Dementia with Lewy bodies). Over 1200 neurons were assessed per brain, and what the investigators found was that the total number of neurons that were displaying signs of apoptosis was much greater in the dopamine neurons without Lewy bodies.

That is to say, the majority of dopamine neurons undergoing apoptotic cell death did not appear to contain Lewy bodies (in fact, one of the cases had NO Lewy body-containing dopamine neurons undergoing apoptotic cell death – Lewy bodies were present in the specimen, but there was no sign of cell death in those Lewy bodies-containing cells). This finding led the researchers to conclude that some dopamine cells may be dying before Lewy bodies have a chance to form, which would suggest that the presence of a Lewy bodies does not predispose a neuron to cell death.

And this result was replicated by another independent research group:

Title: Lewy pathology is not the first sign of degeneration in vulnerable neurons in Parkinson disease.
Authors: Milber JM, Noorigian JV, Morley JF, Petrovitch H, White L, Ross GW, Duda JE.
Journal: Neurology. 2012 Dec 11;79(24):2307-14.
PMID: 23152586               (This article is OPEN ACCESS if you would like to read it)

The researchers who conducted this study examined the extent of dopamine neuron dysfunction and degeneration among postmortem sections of brain from 17 healthy controls, 33 with incidental Lewy body disease (ILBD), and 13 cases of Parkinson’s (with a mean disease duration of 8.3 years). While the density of dopamine neurons (as measured by their total number) was observed to decrease as the Lewy body burden became more severe, a significantly high percentage of dopamine cells were found to be dysfunctional or dying without any Lewy bodies present inside those cells. These results suggest that significant neurodegeneration and cellular dysfunction precede the appearance of Lewy bodies in dopamine neurons,… which basically challenges the idea that Lewy bodies are playing a pathogenic role of Parkinson’s.

And this phenomenon of cell death occurring before protein aggregation does not appear to be specific to Parkinson’s – similar results have been observed in Huntington’s disease (Click here to read more about this).

For a good OPEN ACCESS review of Lewy bodies – click here.

So Lewy bodies aren’t involved with Parkinson’s?

I’m not saying that.

But it is strange that some people with “Parkinson’s” don’t have Lewy bodies in their brains (Click here to read more about this), and then there are the 20% to 50% of cases of pathologically proven Alzheimer’s disease that also have Lewy bodies (Click here to read more about this).

On top of that, there was the study which involved the analysis of 273 brains from people who died from conditions other thanParkinson’s disease. The research found that the presence of Lewy bodies in the brain increased from 3.8% to 12.8% between the sixth and ninth decades – and remember these brains were not clinically associated with Parkinson’s (Click here to read about that research).

Another study found that 33 of 139 brains from ‘clinically normal’ individuals contained Lewy bodies in various regions (Click here to read that study).

But maybe those people were going to develop Parkinson’s later in life?

Perhaps. But something smells a bit fishy to me.

And based on the evidence presented here today, your honour, I am officially asking if Lewy bodies are fake news.

What does it all mean?

A research scientist’s job is to basically question everything.

Particularly anything that is considered ‘dogma’. You are given a spade as you enter the world of scientific research and encouraged to dig until you find something (and to keep up all of the digging until you are put out to pasture). Now, if you are luck enough to actually find something interesting during your dig, others will swarm to your hole and help you dig (whether you like it or not). And the bigger the find, the bigger the ultimate hole.

Sometimes during that digging process, however, certain discoveries will be made that may question whether the initial finding, forcing the diggers to ask was the finding as big as initially thought. The collective consensus of all the diggers now in your hole will determine whether you keep on digging or not. But in many situations the decision to keep digging will simply come down to the fact that this particular hole is the best lead we have to understanding a particular topic or medical condition. And so let’s just keep digging.

For over 100 years now, researchers have been fascinated with cellular inclusions called Lewy bodies. And during that period of time, Lewy bodies have become what is considered one of the cardinal features of the Parkinsonian brain, and implicated as a potentially instrumental agent in the course of the condition… despite the occasional bit of research that has questioned their true relevance to Parkinson’s.

New evidence from a yet-to-be peer-reviewed research article provides not only an intimate view of the composition of Lewy bodies – suggesting that these cellular inclusions are the result of accumulating piles of cellular debris – but also proposes a model of how Lewy bodies may be developing and drive the neurodegenerative condition. Whether these aggregates are actually involved in the course of Parkinson’s – or simply caught in the wrong place at the wrong time – is yet to be fully determined.

I may have presented a slightly biased view of Lewy bodies in this post, one that has gone against the general consensus.

But then again I like to think of myself as a research scientist. And while I’m digging, I’ll question everything.


Poor little Mr “Lewy body” got the blame simply due to his presence. Source: Youtube

The banner for today’s post was sourced from Washington.edu