Summary

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Watch: Palliative care doctor warns 'avoidable' suffering is occurring on NHS

  1. Plenty for MPs to ponderpublished at 17:54 Greenwich Mean Time 28 January

    Jacqueline Howard
    Live page editor

    The first session of experts - medical and legal - advising MPs on the assisted dying bill drew to a close a little earlier, and it's certainly given the committee a lot to think about.

    We heard concerns over the risk of patients being coerced into assisted dying and the training involved in spotting it, how implementing the scheme might affect resourcing of palliative care and whether the courts have the capacity to make the final judgements.

    There are two more evidence sessions to come tomorrow and Thursday to help inform amendments to the bill, and plenty more scrutiny after that before MPs will next vote - in April at the earliest.

    We're ending our live coverage there but if you've got anymore questions about the bill or assisted dying more generally, this very handy explainer has all the information you need. Thanks for joining us.

  2. Four points to summarise this afternoon's evidencepublished at 17:52 Greenwich Mean Time 28 January

    Media caption,

    Earlier, England's chief medical officer Prof Chris Whitty said people must not face a 'bureaucratic thicket' if they choose to die

    As today's committee hearing into the Terminally Ill Adults (End of Life) Bill, external comes to a close, here's a quick recap of what we heard this afternoon:

    And as a reminder, the committee was also hearing evidence this morning - you can view our recap of that session here, which included evidence from England's most senior doctor Chris Whitty.

  3. Committee hearing endspublished at 17:26 Greenwich Mean Time 28 January

    Today's evidence-hearing session is now over - stick with us and we'll recap the day's key takeaways shortly.

  4. What about those who feel like a burden to their families?published at 17:21 Greenwich Mean Time 28 January

    Spielvogel is now addressing a question about whether people opt for assisted dying because they feel like a burden to their families.

    He says people often feel that way towards the end of their life, but that it's embedded in a laundry list of other reasons.

    Spielvogel argues that it is valid for people to say they can see what their suffering is doing to their family, if they are also saying that they have tried everything palliative care has to offer but are still suffering. It's only a red flag, he says, when assisted dying is a patient's only option - he adds that this is incredibly rare.

    Kaan agrees, saying it's common for people to mention that they don't want to be a burden on their families - but she says if a patient raises this, it often leads to a further exploration of what other resources there may be available.

  5. American doctors asked how assisted dying works where they practisepublished at 16:55 Greenwich Mean Time 28 January

    We're back and hearing from Ryan Spielvogel and Jessica Kaan, two doctors in the United States, where assisted dying is legal in some states.

    Labour's Kim Leadbeater - who brought the bill to Parliament - asks both doctors what assisted dying looks like in their respective states.

    Spielvogel says that in California, where assisted dying came into law eight and a half years ago, doctors test the mental capacity of patients "every day" - and there are "codified steps and processes" in place.

    He says he has "never seen a case" where he suspected a patient was coerced into choosing assisted dying and that during a testing session, practitioners remove the family from the room "and dig deep" into the reasoning behind their choices.

    Meanwhile, Kaan - the medical director at End Of Life Washington - says physicians are trained to assess capacity and continually assess patients over time. "This is not outside the realm of what physicians are trained to do in any other case of medical decisions," she tells MPs.

  6. Brief break in proceedings as MPs vote on another matterpublished at 16:37 Greenwich Mean Time 28 January

    A division bell has rung out in Westminster, meaning there'll be a brief pause in proceedings.

    These bells signal that a vote on an issue is beginning - and that MPs have eight minutes to cast theirs before the doors to the division lobbies are locked.

    The vote today is on the Women's State Pension Age (Ombudsman Report and Compensation Scheme) Bill. It would require Pensions Secretary Liz Kendall to put forward plans for a compensation scheme for what are known as the Waspi women, affected by changes to the state pension age.

    We'll let you know when the assisted dying bill committee is back in place.

    MPs sit in a horseshoe formation to ask experts questionsImage source, UK Parliament
  7. Analysis

    Debate over whether assisted dying will make palliative care better - or worse - rumbles onpublished at 16:29 Greenwich Mean Time 28 January

    Nick Triggle
    Health correspondent

    England’s chief medical officer Prof Chris Whitty told MPs this morning that the introduction of assisted dying should not make any difference to palliative care.

    This contrasts with the view of House of Commons’ health committee, which last year found evidence it had led to better end-of-life care in some countries where assisted dying is allowed.

    But Association of Palliative Medicine president Sarah Cox countered this a little earlier, saying that while it has improved in countries where assisted dying had been implemented it had improved "three times better" in countries where it had not been implemented.

    Of course, much depends on funding and whether extra money is provided on top to pay for it - something the British Medical Association has called for.

    Health Secretary Wes Streeting, who voted against the bill last year, has already suggested it could lead to cuts in other services. Last year he said it would have “resource implications” which would come at the expense of other choices.

    Expect this issue to feature throughout this bill’s Parliament journey.

  8. Level of scrutiny bill facing makes it tighter pre-legislative model than in other countries - barristerpublished at 16:21 Greenwich Mean Time 28 January

    Back to another of the legal voices we're hearing from - Max Hill KC - who says the level of scrutiny this bill is receiving isabsent in all comparative examples around the world.

    "That makes this already a tighter pre-legislative model than we see in other countries that have gone down this route - that’s worth remembering," he says.

    Hill also addresses a question on pressure the bill might put on the justice system, saying what's needed is "something that is workable".

    He suggests going through parts of the bill and replacing references to the High Court with something else, such as a panel, and proposes the possibility of retired judges playing a role in such a panel.

    • For context: The bill currently says that once two independent doctors are satisfied that a person seeking assisted dying treatment is eligible, a High Court judge must then preside over the case - including hearing from at least one of the doctors.
  9. Is it enough for two doctors to be involved in a patient's assisted dying journey?published at 16:10 Greenwich Mean Time 28 January

    Next up, Alex Ruck KeeneKC is asked about patient capacity assessments and if more than two doctors should be involved in a person's decision to seek assisted dying treatment.

    Keene says that on the capacity side, this is not a healthcare decision but an existential one. The more people that can be brought into the decision making the better, he adds.

    He cites social and medical care as important perspectives in such a process.

    • As a reminder: The bill in its current form requires a terminally ill person to satisfy two independent doctors of their eligibility for assisted dying treatment - with at least seven days between each assessment.
  10. Retired judge with Parkinson's: This bill is never going to provide an assisted death for mepublished at 16:00 Greenwich Mean Time 28 January

    We're continuing to hear from Mostyn (see our last post), a retired High Court judge who himself has Parkinson's disease. He's asked whether the assisted dying bill makes it more likely for his family to be prosecuted if he were to go to Dignitas (see our earlier post).

    He says he fears he'll be one of the people who does still go to Dignitas - "this bill is not ever going to provide an assisted death for me," he says, explaining how the medical community would only be able to describe what likely, not definitely, awaits him.

    Parkinson's is a progressive neurological disorder affecting the brain and nervous system.

    "It's either going to be a poor death here, I'm choosing my words carefully, or to go somewhere like Dignitas," Mostyn says - adding he'd be "extremely surprised" if a prosecution ensued in the event his children took him to Calais and then drove him to Zurich where Dignitas is.

  11. 'Trust me, the High Court does not have capacity for this'published at 15:49 Greenwich Mean Time 28 January

    Retired High Court judge Nicholas Mostyn tells the panel that he thinks it would be "impossible" for the High Court to rule in every assisted dying case - something the bill, in its current formulation, calls for. (Read more about what's in the proposed law.)

    Mostyn calculates how many hours it might take for High Court judges to make decisions on assisted dying: "You’re talking about nearly three quarters of the entire Family Division [Court] doing nothing but this."

    He goes on:

    "It should be done in the Spanish way, by a panel set up... for each case, a doctor and a lawyer, they have to agree, and they check everything has been done lawfully... They don't make any value judgement...

    "I believe that an ad hoc system like that... a doctor and a lawyer doing a check would be the best way of doing it.

    "The High Court, trust me I've just come from there, has not got the capacity."

  12. Bill doesn't stop people travelling to Dignitas, says former director of public prosecutionspublished at 15:46 Greenwich Mean Time 28 January

    We're continuing to listen in to experts answer questions from MPs about the assisted dying bill - and bring you the key details. Next up are legal voices, including Max Hill KC, the former director of public prosecutions for England and Wales.

    He talks about people visiting Dignitas - a well-known assisted dying clinic in Switzerland - and says the assisted dying bill doesn't solve the problem of anybody actually travelling there.

    But he says it does provide an opportunity for people diagnosed as being terminally ill to no longer have to resort to travelling to the European country - which he says will make a positive difference.

    At present, laws throughout the UK prevent people from asking for medical help to die. Those who assist someone to end their life face up to 14 years in prison. Hill says that in his experience of working as director of public prosecutions, he oversaw a number of cases to do with people travelling to Dignitas.

    The major advantage of the bill, he says, is that scrutiny will be before death and in the case of coercion - prosecutions can be brought.

  13. Doctor insists 'better mental health services' needed for patients with terminal illnessespublished at 15:33 Greenwich Mean Time 28 January

    • Warning: This post contains distressing content and mentions of suicide

    Labour MP Lewis Atkinson says around 650 people a year who take their own lives have a terminal illness and asks whether the bill could reduce this.

    Sarah Cox, president of the Association of Palliative Medicine, says it is "difficult to know" the impact of assisted dying legislation on the rate of suicides.

    Although the rate of suicide is increased in people with terminal illnesses, this is predominantly in the first six months after diagnosis. Thus, Cox says, she recommends "better mental health services" and "better support" for individuals after a terminal diagnosis.

    With regard to the global picture, Cox says it is "confusing" and concludes that it can't be said the introduction of an assisted dying bill will "actually stop those suicides".

  14. Does the bill place doctors under 'moral distress'?published at 15:15 Greenwich Mean Time 28 January

    The conversation around patient coercion continues, with Sarah Cox, president of the Association of Palliative Medicine, repeating something said earlier - that it can be difficult to spot.

    She also raises concerns to MPs about the two doctors who the bill dictates would be involved in the process of someone seeking assisted dying.

    How is it possible, she asks, for those medical professionals to have knowledge of "all illnesses" as well as check adequately for mental capacity and coercion, while simultaneously signposting to palliative care services?

    Cox says these doctors may be placed under significant "moral distress".

    • As a reminder: The proposed law on assisted dying requires a terminally ill person to satisfy two independent doctors of their eligibility - with at least seven days between each assessment.
  15. NHS assessments to determine patient's mental capacity are 'elephant in the room' - doctorpublished at 15:07 Greenwich Mean Time 28 January

    We're hearing from Rachel Clarke again, who's speaking about the way patients currently make decisions about their medical care and how this comes into play with the bill.

    She says a patient is able to refuse any care they are offered during their life if they have been assessed to be capable of making their own decisions. Doctors may think a patient's choice is unwise, "but that is irrelevant".

    The elephant in the room, she continues, is the current assessment for determining a patient's capacity to make those decisions about their care. She suggests that anyone who says these assessments are easy and routinely done well in the NHS has not got enough experience in observing them be carried out.

    She appeals to the assisted dying bill committee to increase the focus on education in the bill - saying training in this area should happen "from day one of medical school". Right now, she says, death is "on the periphery" of the current curriculum and medical students may get one week of palliative care training in five years of medical school - she says this has a knock on effect through all levels of seniority in the NHS.

  16. Concerns raised about funding for palliative care vs assisted dyingpublished at 14:54 Greenwich Mean Time 28 January

    We're continuing to listen in to medical professionals answer questions from MPs about the assisted dying bill - and bring you the key details.

    Asked about the impact of assisted dying on palliative care, Sarah Cox says recent evidence - looking at the past 10 years where countries in Europe and US states have been assessed in terms of their development of palliative care services - suggests it has improved in countries where assisted dying has been implemented, but it has improved "three times better" in countries where assisted dying has not been implemented.

    Cox, a doctor and president of the Association of Palliative Medicine, goes on to say the implementation of assisted dying is impeding the development of palliative care services.

    She also argues that if funding for palliative care and assisted dying comes from the "same pot", then the assisted dying bill could have a "detrimental effect" on palliative care as there'll be competition for a "limited resource".

    Dr Sarah Cox, wearing a grey jacket, speaks to MPsImage source, UK Parliament
  17. Doctor tells MPs colleagues lack 'confidence' to have end-of-life conversations with patientspublished at 14:39 Greenwich Mean Time 28 January

    A bit more now from palliative care doctor Rachel Clarke (read our last post), who goes on to tell MPs that is is "impossible" for her to overstate "how much avoidable suffering occurs right now in the NHS", not because of a lack of resource in palliative care, but because of a "lack of confidence, skill and expertise amongst the medical profession with these very difficult conversations".

    Clarke says coercion can sometimes occur "because literally the doctor, the consultant responsible for this patient’s care, won’t even bring up the fact that they think the patient is dying because they think it’s an uncomfortable conversation".

    She recalls working with senior hospital consultants in the NHS who have prevented her team from accessing their patients because they believe the hospital palliative care team "wants to kill the patient".

    "These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now," Clarke says.

    • As a reminder: Coercion - as in a patient being coerced into seeking certain treatment - is a key concern for many people when it comes to the assisted dying bill. The proposed legislation itself says anyone seeking this end-of-life care must "have the mental capacity to make the choice and be deemed to have expressed a clear, settled and informed wish, free from coercion or pressure".
  18. 'In my experience as a doctor, not everyone is trained in spotting patient coercion'published at 14:30 Greenwich Mean Time 28 January

    Dr Rachel Clarke, wearing a red top, speaks to MPsImage source, UK Parliament

    Rachel Clarke, a palliative care doctor, opts to answer a question about coercion and whether some MPs are right to feel concerned about this when considering the bill. (Earlier, MPs heard how medical and clinic staff are trained in safeguarding, though a retired GP acknowledged coercion was hard to spot.)

    Clarke says she'd "strongly push back" on the suggestion coercion is something all medical staff are trained in spotting.

    "I'm the kind of doctor who believes there is nothing to be gained by sugar-coating reality...about shortcomings, failings, areas where my profession the rest of the NHS are getting things wrong", she tells MPs.

    "It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, they're often not trained explicitly in having so-called advanced care planning conversations with patients around the topic of death and dying."

  19. Assisted dying bill committee resumes - watch and follow livepublished at 14:07 Greenwich Mean Time 28 January

    MPs are back in their seats, and the first of this afternoon's experts are introducing themselves and their specialty.

    There's a full list of who we're expecting to hear from in our last post - scroll down to read it.

    Just like this morning, we'll bring you some text updates of what's being said and you can watch the session live at the top of this page.

  20. Who's giving evidence this afternoon?published at 13:51 Greenwich Mean Time 28 January

    Not long now until the committee's afternoon session, due to begin at 14:00 GMT.

    First up this afternoon, we've got some experts in palliative care. They include Dr Sarah Cox, president of Association of Palliative Medicine, which represents medics working in palliative care, as well as James Sanderson, chief executive of Sue Ryder charity which provides palliative and bereavement care.

    Joining them will be palliative care specialists Dr Sam Ahmedzai and Dr Rachel Clarke.

    Then, from 15:15, we'll be hearing some legal perspectives - including Sir Max Hill KC, former director of public prosecutions for England and Wales, Sir Nicholas Mostyn, a retired High Court judge who has Parkinson's, and Alex Ruck Keene KC.

    And then finally from 16:15 we'll hear from some doctors working in the United States - Dr Ryan Spielvogel and Dr Jessica Kaan.