Join the debate – forum

This page is dedicated to the ideas and experiences of people interested in cultural issues in end of life care

In response to user feedback, the ‘debate’ section has been modified.  The page is now open to all comments, rather than debating one topic per month.

So please, if you have a comment concerning cultural issues in end of life care, add your remark below.

9 responses to “Join the debate – forum

  1. the influence of (too) liberal cultures on the request for life-ending procedures and the interaction with palliative care

  2. I am interested in what people from different cultures consider as « a good death ». What is universal? What is typical for ‘our’ culture and in what aspects do people have different ideas?

    • The Western ideal seems to be moving more and more towards the idea that a “good death” is a painless death. While I am not condoning suffering, I can’t help but wonder what this means for us (the West) as a society. Pain and suffering (to a certain extent) may be an important part of life (and death). What happens when they get swept under the rug….

      • To follow up on Sabrina’s comment: (if there is) a focus on a ‘good death’ being a painless death in Western societies this may also detract from addressing other unmet palliative care needs that patients have such as spiritual or social needs (irrespective of the more philosophical questions of pain and suffering) .

  3. I don’t believe there’s any “universal” belief about a good death. That is highly individual, and so many things affect that perspective.

  4. What is the role of religions in shaping the notion of good death? How they might help or restrain people from forming personal beliefs?

  5. Although we know that the individual patient’s expression of religious belief and practice is thoroughly embedded within culture, it is not clear what this means for palliative care services providing spiritual care to multi-faith, multi-cultural populations. I think it would be useful for the forum to discuss practical aspects of spiritual care provision in modern-day Europe. How do we improve access to palliative care? How do we model services to meet the spiritual care needs of immigrant populations and other growing minority groups?

  6. I currently work in Public Health as a researcher, and for the past year I’ve been concentrating on something called the Liverpool Care Pathway (LCP), which is currently all over newspapers and magazines. For the record, I believe that patients and families should be able to refuse the LCP if and when desired. I fully understand that it is not compatible with all religious and moral stances. But I do think that this decision should be undertaken on the basis of fact, rather than the sensationalism that the full spectrum of news outlets, from the usual suspects such as the Daily Mail through to The Guardian and The Economist seem hellbent on propagating right now. So I’m going to attempt to give some semblance of a sensible account of things.

    Dying in the UK, especially outside of hospices, can be a hugely varied experience. Your experience of care might depend on where you live, what disease you have, how old you are and whether you have family looking after you. Hospice care is very specialist care accessed by the imminently dying, and concentrates on relief of pain and other symptoms such as breathlessness, nausea and agitation without trying to cure the the underlying cause of symptoms. It promotes comfort and symptom relief above all else, whilst also trying to promote psychological and social wellbeing.

    The LCP was developed to try to transfer hospice type care to other settings where people die by way of a physical document that provides a checklist of care goals, both medical and non-medical. There are modified LCP documents that are tailored to the needs of A&E departments, burns units, paediatric wards, care homes and peoples own homes.

    One of the most important things to remember is that the LCP is a tool; it isn’t a philosophy, a mandate, a policy or any attempt at replacing decision making by trained professionals, it’s just a tool to be used in care… the same way that an x-ray machine, or a particular line of questioning about symptoms might be used in diagnostic medicine.

    The LCP guidelines require that a patient is placed on the LCP by the most senior doctor available, and that this is then signed off by the patient’s regular doctor as soon as possible. Once a patient is placed on the LCP, they are reviewed every 4 hours to see if this is still the appropriate care plan for them.

    A lot of newspapers have been focusing on guidelines on nutrition and hydration under the LCP. Nothing in the pathway guidance requires that patients have artificial hydration and nutrition withdrawn. Whether these interventions are still appropriate is questioned, along with all other drugs and therapies being received by the patient, but the patient can legitimately be receiving artificial hydration and nutrition until death within the guidelines, if this is what is judged to be appropriate.

    Scare stories about people being “dehydrated to death” or starved are (without passing judgement on individual cases) often misguided because the dying process is widely misunderstood. With death throughout the 20th and 21st centuries mainly taking place in a medicalised setting, with restricted access for non-patients, people are no longer as exposed to the dying process as they once were and medics can be poor at explaining symptoms and stages of dying to relatives and carers.

    But the thing is, diagnosing death is far from an exact science, and the scientific side of medicine would do well to admit this more openly. It is a fuzzy and inexact process, and different ways of predicting death are used in different specialities. GPs in particular use the “surprise question” – would they be surprised if this patient died in the next 12 months, nurses and medics on acute wards monitor declines in bodily systems that can’t be attributed to infection or other causes, care home staff might look for a loss of thirst and appetite. People die with one or multiple diseases, some with massive injuries, some simply from being frail; these patients are unique groups and present the fact that they are approaching death in different ways.

    The moral underpinnings of medicine are benevolence and non-maleficence; twin compulsions to do good, but also to do no harm. Long standing habitual medical tests and drugs, such as blood sugar monitoring for known diabetics, or the use of statins, are discontinued under the LCP, and so called “heroic measures” such as CPR and blood transfusions are also avoided. In the words of Parliamentary Under Secretary of State for Health, Earl Howe, “[the LCP] is used to prevent dying patients from having the distress of receiving treatment or tests that are not beneficial and that may in fact cause harm rather than good.”

    Frail and ill people can and do live for longer if you use cocktails of drugs, artificial nutrition & hydration, oxygen, catheters and colostomies instead of allowing death to take it’s course. Sometimes there are good reasons for doing this; waiting for a transplant for example, or for a special occasion or visit to pass, but this is not necessary or desired by everyone.

    The concept of a “Good Death” is one that underpins the development and constant reappraisal of the Liverpool Care Pathway. It is an acknowledgement of the fact that a slightly shorter time on earth, in a peaceful environment without intrusive medical measures can be preferable to the model of keeping people alive at all costs. It is a reflection on days before death was seen as curable by the medical profession, when the most important thing to do for the dying was to care for them as a whole person, allow goodbyes to be said and peace to surround the end of life. We can’t cure death, and once we acknowledge that, stop railing against it and concentrate on care instead, the concept of a “Good Death” becomes much more likely for the frail and ill who need it.

  7. Hi Emily,
    Thanks for your post. I think your feelings echo those of many end-of-life care professionals. I particularly like this article by doctor/cancer patient Kate Granger which touched on many of the issues you brought up.

    Being based in the Netherlands, it is interesting for me to observe how the controversy and strength of feeling surrounding the LCP in the UK doesn’t really register in other countries. Could this between-country variation reflect differences in end-of-life treatment options? There is for example no need to worry about ‘euthanasia through the back door’ if it is already legal. Or perhaps it reflects differences between countries in healthcare professionals’ communication with patients and their families; many of the complaints from family members in the UK seem to stem from a lack of information and participation in decision-making. Perhaps the problem is not with the pathway itself, but its implementation. Like you said, the LCP is just a tool – but even the best tool is useless in unskilled hands.
    Thanks, Natalie

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