New Report on Outsourcing Assisted Dying to Switzerland

An excellent report ‘The True Cost – How the UK Outsources Death to Dignitas‘ was recently published by Dignity in Dying, discussing the many difficulties associated with UK citizens choosing to end their lives in Switzerland. (Despite it’s title, the report also considers other Swiss organisations prepared to offer medical assistance to die to foreign nationals, such as Lifecircle.) The underlying research was carried out by Bronwyn Parry, Professor of Global Health and Social Medicine at King’s College London and her Research Associate Sally Eales.

One day we will look back in disbelief at how long it took Parliament to realise this.

In the report’s foreword, MP Kit Malthouse, (who chairs the Choice at the End of Life All-Party Parliamentary Group), says “Our outdated laws discriminate between rich and poor, discourage proper conversations between patients and their doctors, criminalise grieving relatives who spend time with their loved ones in their dying moments and oblige people to end their lives before they are ready. Worst of all, while they are predicated on preserving the sanctity of life, they show no mercy to those facing an agonising death, and deny free will to those whose lives and deaths depend upon it. One day we will look back in disbelief at how long it took Parliament to realise this.” The report gives substance to these points through analysis of the current situation and using quotes from many interviews with those who have been involved in the process.

The report goes into admirable depth in many related issues, including:

  • The confusion and inconsistency over the medical approach to requests for discussion about assisted death or requests for required documents. This is something also covered in a recent article by Dr Paul Teed who is currently carrying out research in this area at Bristol University. (If you have personal experience and would be willing to take part in this research you can contact Paul anonymously through his website.)
  • The complexity of the process of arranging an assisted death in Switzerland. The process can take many months. MDMD understand from Dignitas that the process can take 3 or 4 months. Some people leave it too late to get started… to the point that by the time they have the “green light” to go, they are too ill to travel. In a response to a follow up question from MDMD, Dr Erika Preisig of Lifecircle told us that 8% of applications are not progressed because the applicant is no longer able to travel.
  • People are ending their lives too soon, due to the need to be able to travel to Switzerland. Dr Preisig told MDMD that she estimated that 40% of the people who end their lives at Lifecircle choose to do so sooner than they might, if they had the option of a medically assisted death at home, due to fear of no longer being able to travel.
  • Why even the best available palliative care is not always sufficient.
  • The alternatives some people feel forced to consider: refusing treatment and suicide.
  • The cost – typically around £10,000. This figure should, however, be viewed in the context of some other costs:
    a) It includes cremation costs which could cost around £3,000 in the UK
    b) Anyone having to pay for their own residential nursing care will typically be paying around £1,000 per week.
    c) Dignitas are sometimes able to reduce or waive their fees for those who do not have sufficient financial means.

This important and hard-hitting report makes an overwhelming case for changing the UK law. Until that happens there are no good alternatives for some people. The clear conclusions for anyone contemplating “going to Switzerland” are to: apply early; expect bureaucratic difficulties; and, regretfully, plan to go before you would ideally choose, while you are still able to travel. MDMD recommend reading the report in full and thank those who contributed to its production.

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Victoria, Australia law passes the upper house

Excellent news from Australia. Further to our previous report, the upper house of the Australian state of Victoria has passed a Voluntary Assisted Dying bill. The bill passed by 22 to 18 after a 28 hour sitting. The progress is reported in this Guardian article.

The debate in the upper house caused some amendments to the original bill, in particular, one which tightened the life-expectancy requirement from 12 months to 6 months unless the patient is suffering a neurodegenerative illness such as motor neuron disease. Although this is more restrictive than MDMD would like to see, as it is unlikely to be applicable to early stage dementia patients who would wish to end their lives while they still have the mental capacity to do so, this is a welcome step forward beyond the rigid six-month life expectancy criterion used by states such as Oregon in USA, and proposed for the UK in September 2015. The changes to the Victoria bill still need to be ratified by the lower house, but this is reported to be a formality which will be completed next week.

The Guardian article cautions “The law comes into operation in June 2019. … The next state election is due in November next year and already opponents are saying they will campaign to have the law repealed before it ever commences.” Although the battle is not yet over, very significant progress has been made.

Looking at how and why such progress came about in Victoria, the Guardian article identifies the following factors in its interviews with those involved in the debate there:

  • The process was sponsored by the Victoria government, rather than it being a private members’ bill. This gave it significant additional resources and authority.
  • The Victoria Premier Daniel Andrews, supported the Bill. Andrews, a Catholic, changed his mind on assisted dying after his father died of cancer last year.
  • There was a properly informed debate. The facts were used to overcome the unfounded fears and uncertainties spread by those opposed to the bill.

How long will we, in the UK, have to wait until we have a government in tune with the electorate on this issue? Perhaps when we have a prime minister who has witnessed at first hand the demise of a close relative with dementia, when the person’s rational requests for a medically assisted death are refused, or when the person takes their own life in desperation, like Sir Nicholas Wall did earlier this year. Dementia is now the leading cause of death in England and Wales. Many more die with it rather than of it. Dementia sufferers who seek a medically assisted death can obtain one, provided they act while they still have the mental capacity to make a life ending decision. However, they can only do this by going through the arduous process of arranging it in Switzerland. A recent report shows how difficult this process is.

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Pharmacist driven to break a bad law.

The Daily Telegraph has been following another case relating to assisted suicide / murder. Pharmacist Bipin Desai was accused of giving his 85 year old father a lethal drink containing concentrated morphine stolen from the pharmacy where he worked. The high court judge threw out the charge of murder, allowing Mr Desai to go free with a nine month jail sentence suspended for nine months for assisting suicide.

What message do cases like this give to our society? That it is acceptable to steal lethal drugs and apply them out of compassion… but make sure you can demonstrate that you were asked to do it? Is that the best we can offer?

But what if you are not “lucky” enough to have access to appropriate drugs and know how to use them? Or there wasn’t enough evidence that you were being asked to help someone die, if indeed you were? Or you just couldn’t bring yourself to break the law – leaving the dying person to suffer at their end of life, against their will; and leaving the family to suffer as they powerlessly watch the unacceptable situation unfold.

This story is by no means isolated. Only last month another case was reported with some similarities.

We owe our elderly people and their families much better care than this. Where are the safeguards in the current law? Where is the compassion? How can people be expected to deal with the natural desire to do the best they can for their loved ones, but then have to face not just the loss of their relative, but a stressful and difficult criminal investigation which turns their life upside down for years afterwards?

There is a better way, as demonstrated in the more enlightened countries that allow a legal option of medically assisted dying. At a minimum, BEFORE any lethal drugs are administered:

  • The person wishing an assisted death should make their end of life wishes known well in advance – ideally in a written, independently witnessed statement, in addition to an advance decision.
  • All possible support should be given to help people adjust to changed capabilities before choosing to end their life.
  • All available palliative care options should be fully considered and found unacceptable.
  • The situation should be assessed by multiple professionals, over a period of time, in particular by interviewing the person concerned to determine that their wishes are clear, consistent and made without coercion.

We need a better approach to end of life care – one in which the option of a medically assisted death can be openly discussed with the care team, and as a last resort, carried out by trained professionals.

We need to protect people – the dying, the vulnerable, the well meaning families – from situations like this court case. The judge appears to have taken a reasonable course of action, given the current law. But the real tragedy is that these sort of situations are allowed to happen – by a broken law and restricted medical practice which prevent some people having the “good death” they wish for.

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Dementia and Alzheimer’s increasingly the leading cause of death

In October 2016 the Office of National Statistics reported that in 2015 dementia and Alzheimer’s were now the leading cause of death in England and Wales. We discussed this in a latest news article then. A year later they have now published data for 2016, which shows this trend increasing.

Dementia and Alzheimer’s accounted for 12% of all deaths in 2016, (up from 11.6% in 2015). For the over 80’s, this rises to 18.9% (up from 18.1% in 2015).

By way of explanation the ONS say, “Although general increases in longevity and improved treatment of other conditions are part of the reason for this increase, improvements in recognition, identification and diagnosis of dementia and Alzheimer’s disease have also contributed.”

The final stages of these frightening diseases are something that many of us would like to avoid. This is a strong reason why MDMD seek more wide-ranging assisted dying legislation than proposals which are limited to helping the “terminally ill”, where this is interpreted as having a life-expectancy of six months or less. Some people, like MDMD supporter Alex Pandolfo, plan to end their life in Switzerland, rather than risk suffering the end stage of Alzheimer’s disease. While this may not be as good a death as he might wish, MDMD quite understands why people like Alex choose this option, instead of suffering like Joan Cheatle for example.

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When is it right to turn off Life Support?

The Daily Mail recently reported a case of a 74 year old woman in a minimally conscious state, whose daughter has won a court case to have her mother’s life support turned off. The NHS Trust involved, acting in the patient’s “best interests”, wished to continue treatment, but this was over-ruled by the judge. It appeared very unlikely that the woman’s condition would ever improve, though with continuing treatment she might live for three to five years.

The case turned on an old email the daughter found in which her mother said “Did you see that thing on dementia? Get the pillow ready if I get that way!” The judge took this as evidence of the woman’s wishes not to be kept alive. The case has strong parallels with that of police officer Paul Briggs.

These cases highlight the importance of writing an advance decision, clarifying a person’s wishes for refusing treatment (including refusing artificial feeding and hydration), in the event that at some point in the future they are no longer able to make treatment decisions for themselves. With an advance decision to refuse treatment in place, everyone would clearly understand the patient’s wishes, and medical staff are legally required to follow the patients wishes regarding treatment refusal.

We owe it to both our well-meaning relatives and to our doctors, to avoid difficult conflicts like this where people with different opinions about what is best for us have to argue it out in court. It can’t be pleasant for them, whichever side of the argument they are on, and it certainly isn’t good for us if our wishes are not acted upon, or are delayed.

MDMD strongly encourages everyone to make an advance decision, regardless of age or current health. See our advice on end of life planning here. If you haven’t written yours, please do so… and then encourage others to write theirs.

Some might think that allowing someone to die by turning off artificial feeding and hydration is cruel, arguing instead for a right for euthanasia in such cases. When the person is in a coma, and with appropriate pain killers, the dying person will not suffer, even though the dying process may take around 2 weeks. Most importantly, turning off life support is currently legal in the UK, whereas euthanasia is not.

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Update on Omid T’s High Court Case

Omid T suffers from Multiple Systems Atrophy. An incurable condition which has permanently reduced his quality of life below the level he is able to accept. It is not a terminal condition – he may have to continue suffering against his will for many years. Omid is taking legal action to request medical assistance to die. He is unable to take his own life, with dignity, without assistance.

Omid’s case differs from that of Noel Conway, who is also taking legal action, as Noel Conway is only arguing for medical assistance to die once doctors believe he has six months or less to live. For people like Omid, a six-month criterion is too restrictive as they have to suffer unacceptably for many years before that point, which doctors may have extreme difficulty in accurately predicting.

Omid’s case is approaching the next stage, with a High Court judgement due on 21st November 2017.

There is no palliative care that can help me. My life is beyond that

Omid’s latest message is available here. In it he says “There is no palliative care that can help me.  My life is beyond that”. This highlights the limits of palliative care, touted by some as a reason why legalised assisted dying is unnecessary. While palliative care is a great help for many, and MDMD strongly supports the efforts of those who work in this area, we believe those involved in palliative care should recognise the limitations of their approach and the choices of people like Omid for whom even the best available palliative care is unable to make their life tolerable for them.

Omid’s case still needs funding. Please donate if you are able, on his crowdjustice page.

Saimo Chahal, the Bindman’s lawyer leading Omid’s case, has written a useful article in the Law Society Gazette about the case, and the impact of the recent ruling in the Conway case. The full Conway ruling is available here.

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