London Dementia Support Help Information

Dementia London

Sign up to receive NHS Dementia Information Service emails

Visit the Dementia Information Service, which guides you through the often difficult time after a dementia diagnosis.

The emails can support you if you have just found out, or accepted, that you or a loved one has dementia.

Sign up to receive 6 emails about getting the help you need, now and in the future

You will be sent a weekly email for 6 weeks, and occasionally other relevant health information via email (for example surveys about your use of the service)

NHS Website

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Dementia emails week by week

Each week’s email will cover a different need-to-know topic, including:

Understanding dementia

Essential information about dementia, including what do to after a diagnosis and where to turn for advice.

Get the best dementia healthcare

Find out about the treatments available and how to get the most out of healthcare services.

Dementia at home

How to make sure someone with dementia is as comfortable as they can be at home, how to get help at home, and technology that can make life a bit easier.

Finance and legal

Advice on how to organise financial and legal affairs for someone with dementia, and how to make plans for the future.

Get the best social care

Information on what help is available from social services and how to get the most out of it.

Carers: looking after yourself

If you’re looking after someone with dementia, who’s looking after you?

Find out where to turn for help and support.

Please visit link below for official NHS website.

Dementia Information Service NHS

Sign up to receive NHS Dementia Information Service emails

Visit the Dementia Information Service, which guides you through the often difficult time after a dementia diagnosis.

The emails can support you if you have just found out, or accepted, that you or a loved one has dementia.

Sign up to receive 6 emails about getting the help you need, now and in the future

You will be sent a weekly email for 6 weeks, and occasionally other relevant health information via email (for example surveys about your use of the service)

NHS Website

View full Terms & Conditions and Privacy Policy
Submit

Dementia emails week by week

Each week’s email will cover a different need-to-know topic, including:

Understanding dementia

Essential information about dementia, including what do to after a diagnosis and where to turn for advice.

Get the best dementia healthcare

Find out about the treatments available and how to get the most out of healthcare services.

Dementia at home

How to make sure someone with dementia is as comfortable as they can be at home, how to get help at home, and technology that can make life a bit easier.

Finance and legal

Advice on how to organise financial and legal affairs for someone with dementia, and how to make plans for the future.

Get the best social care

Information on what help is available from social services and how to get the most out of it.

Carers: looking after yourself

If you’re looking after someone with dementia, who’s looking after you?

Find out where to turn for help and support.

Please visit link below for official NHS website.

Birmingham Dementia Support Help Information

Birmingham Dementia

The Birmingham Dementia Roadmap provides high quality information about the dementia journey alongside local information about services, support groups and care pathways to assist primary care to support people with dementia and cognitive impairment, their families and carers.

The content is organised into topics to reflect the journey with dementia, from understanding dementia and being worried about your memory through to the diagnostic processpost diagnosis support and living well with dementia. There are also topics on carer health and planning for the future.

“Give me something to believe in” – Birmingham and Solihull Dementia Strategy 2014-17 

Launched in May 2014, the strategy has been developed on behalf of the Clinical Commissioning Groups (CCGs) that cover Birmingham and Solihull as well as Birmingham City Council and Solihull Metropolitan Borough Council.

The strategy describes:

  • The services we think should be in place for people with dementia in Birmingham and Solihull and their carers;
  • The services currently in place; and
  • A framework for Birmingham and Solihull CCGs, Birmingham City Council and Solihull Metropolitan Borough Council to use when planning services

It has been developed using feedback gathered from people with dementia, their families and carers and draws upon a number of national strategic drivers including Living Well with Dementia, the National Dementia Strategy 2009, and The Prime Minister’s Challenge on Dementia – Delivering Major Improvements in Dementia Care and Research by 2015.

The Strategy covers the five main parts of our dementia pathway:

  1. Heath Promotion and Prevention
  2. Recognition and Identification
  3. Assessment, Diagnosis and Planning for the Future
  4. Living Well With Dementia
  5. Increasing Care (including End of Life Care)

Download Birmingham and Solihull Dementia_Strategy 2014-17.

Quick links:

Tell us what you think

We would like to hear your views about how you use the Dementia Roadmap to support people living with dementia.

Tell us about your local group

If you run a local group or service for people living with dementia and would like to see information about your group appear on the Birmingham Dementia Roadmap, please complete this simple form.

Topics

  • Preventing well This section provides details of groups and resources related to the prevention of dementia, ensuring that the risk of people developing…
  • Diagnosing well Diagnosing dementia is often difficult, particularly in the early stages. The GP is usually the first person who is  consulted either…
  • Supporting well When someone is diagnosed with dementia, they should be supported to remain as independent as possible, and to continue to enjoy their…
  • Living well Many people are happier if they can remain independent and in their own homes as long as possible. It is important for clinicians to…
  • Dying well When someone is diagnosed with dementia, they should be encouraged to remain as independent as possible, and to continue to enjoy their…
  • Caring well GPs and the primary care team can provide carers with invaluable support, advice and information. For example, they can provide information…
  • Underpinning This section contains details of groups and resources relevant to several topics that underpin the well pathway for dementia, such…

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.

DIGNITAS 

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.

Prerequisites

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

www.exit.ch

www.exit-geneve.ch

www.exinternational.ch

www.lifecircle.ch

www.worldrtd.net/de/member-organizations

www.rtde.eu/?page_id=110

 

Suicide and suicide-attempt prevention

www.soars.org.uk

www.befrienders.org

www.samaritans.org

www.afsp.org

 

Patient’s Rights, Living Wills and Humanism

www.who.int/genomics/public/patientrights/en

www.compassionindying.org.uk/advance-decisions.html

www.the-brights.net

 

Books

“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

 

Film

“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.

http://www.pbs.org/wgbh/pages/frontline/suicidetourist

 

Press

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

https://www.irishtimes.com/news/when-a-loved-one-wants-to-die-1.551976

 

 

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.