Better care at the end of life: we need to change the conversation
BMJ 2024; 386 doi: https://doi.org/10.1136/bmj.q1920 (Published 04 September 2024) Cite this as: BMJ 2024;386:q1920
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Dear Editor
End-of-life decisions and End-of-life care are becoming today more complicated and with many different views and ideas as we have seen first in the Opinion article "Better care at the end of life: we need to change the conversation" by Charlotte Augst and in the Rapid Response submitted by Louisa Polak: "Conversations centred on choice and individual autonomy may not help improve end-of-life care".
End-of-life decisions are linked in many cases to the religious beliefs of the dying patient and in some cases they are linked to the religious beliefs of the doctor who is treating the dying patient.
As we are having many views and some confusion, please allow me to explain the missing unknown view of about 4 million British Muslims. who many of them are dying in hospitals.
In relation to End-of-life decisions and End-of-life care Muslims believe that GOD, is the Creator of all of us, is the Owner of every one's life, He gives life and He only takes life.
The moment of the end of life: DEATH is fixed only by our Merciful GOD.
In fact, the moment of death was fixed by GOD, when every one of us was 6 weeks during pregnancy.
No judge no Court no doctor no Member of Parliament no law no family member and no Muslim patient is allowed to interfere or to decide about ending his/her own life.
Every Muslim believer is made aware of sudden death frequently and to be READY and expect to die at any moment of his/her life.
Present life is SHORT and TEMPORAL and the REAL LIFE is the eternal after-life: Heaven or Hell and this will depend on the life of the Muslim if he/she was obeying GOD and was practising believer
Muslims believe that death should be NATURAL, as fixed by GOD, the Creator.
In the Islamic Holy Scriptures: Attempted suicide, Assisted suicide,Suicide or Euthanasia are FORBIDDEN to do by any Muslim believer
A Muslim believer is not allowed to organise any 'living will' (to end his/her life and be killed)
with the full right to be given halal (permissible) food, nutrition, water and life-saving treatment, and to be fully respected even if one becomes mentally or physically incapacitated, until the sudden natural stoppage of heart/circulation and lung/respiration, definitely not to die from starvation or dehydration, as this is considered killing and against God's wishes.
To die as a practising Muslim believer, declaring and uttering frequently and again at moment of natural death:
There is only one GOD: the GOD of Abraham, Moses, Jesus, and Muhammad: peace be upon them, and that the Prophet Muhammad was the final messenger.
Surrounded by family members in the privacy of one's home (the Muslim's hospice), after having the final halal (permissible) food and drink and halal (permissible) medicine.
A Will for inheritance should have been made out before to the family members and according to the teachings of Islam.
All efforts to be made to pay any loan before the death of the Muslim
Reassured that a quick burial (cremation is not allowed), after washing the body and after doing a special prayer to the dead person, with full respect to all the human body and organs, totally reassured that all his/her wishes have been respected and implemented.
"Patient autonomy" and " Muslim patient decisions" are all according to the wishes and orders of our GOD
This is the best type of dying/ death for every Muslim (2000 million in the world) and is the best "COMPASSION IN DYING" and the MOST DIGNIFIED.
Dr MAJID KATME
Retired Psychiatrist
Former Chairman: Islamic Medical Association/UK
Competing interests: No competing interests
Deasr Editor
“We get into the habit of living before acquiring the habit of thinking. In that race which daily hastens us towards death, the body maintains its irreparable lead” - Albert Camus, Myth of Sysiphus. [1]
Augst highlights several important issues around end-of-life care, [2] however discussion on end-of-life care reminds me of the above quote. When the self does not have the time to come to terms with mortality, physicians who treat patients (often for a limited time) before death are equally suboptimally equipped.
We now approach patients the day we meet them to remind them of terminality, to put in escalation plans, and to break the difficult news to the next of kin. Regularly this task is done by doctors a few years out of medical school (and sometimes less than a decade out of secondary school).
Society has a responsibility to decide how important discussing death is, after all ignorance can be bliss.
Competing interests: No competing interests
Dear Editor
The voice of single people needs to be given attention in these debates. Many do not have surviving families or friends or indeed a designated health worker to advocate for them. . Some people do a wish to have an even greater level of autonomy than is suggested by most debates by not wanting to include others at all in their decisions. This can only be hopefully honoured by respecting a written advance decision or a note to decline any involvement in discussions which is a reasonable way forward. It will of course need to have the usual caveats to cover the possible necessity of over riding parts of the individual's decision. ,
I have read a few of the forms used by organisations dealing with persons' wishes about dying but the position of single individuals is not specified Does anybody perhaps know of any which do? Nor is there advice to inform people that there is no obligation to discuss these issues if they are not inclined to do so.
Competing interests: No competing interests
Dear Editor
Few would disagree that it is bad when someone dies shortly after receiving medical treatment that their family believes they would not have wanted. But I am concerned that Augst [1] oversimplifies the challenges involved in avoiding this, and that the changes she proposes would compound these challenges rather than helping address them.
There are two separate shared decision-making tasks here: the first aims to help someone establish their preferences for future care; the second, enacted after they lose the ability to communicate, aims to reach a consensus with their family about what to do when death is probably imminent.
Augst appears to see end-of-life decisions as a set of binary choices, made in advance by an individual, that clinicians are then “compelled to enact”. In the UK, this describes the situation regarding advance directives to refuse treatment. But listing and prohibiting specific interventions is of limited use for navigating the complex situations common in end-of-life care; to replace lists of choices, a ReSPECT [2] form is increasingly widely used to establish and document a more nuanced picture of someone’s preferences. In my experience that picture is extremely helpful when working with distressed relatives to decide what to do for someone who can no longer speak for themself. This delicate collaborative work, impossible to measure or regulate, seems to bear little relation to Augst’s recommendations.
Another of Augst’s proposals overlooks the fact that some people prefer not to think about their future decline and death. This has been particularly well evidenced in frail older people [3] . I am concerned that Augst’s enforceable “duty of candour” might lead clinicians to override such people’s right to decline to talk about the future.
To think about end-of-life decisions, it helps to adopt a model of distributed decision-making and relational autonomy [4] . This model emphasises that health decision-making often involves multiple encounters over time with multiple people, including family, friends and clinicians, and that “patient autonomy” is often best achieved when family and friends can help the patient gather the information they want and clarify what matters to them. Talking about “autonomous decision-making” fails to represent this complex process.
1. Augst https://doi.org/10.1136/bmj.q1920
2. https://www.resus.org.uk/respect
3. Combes S, Gillett K, Norton C, Nicholson CJ. doi:10.1177/02692163211013260
4. Rapley https://doi.org/10.1111/j.1467-9566.2007.01064.x
Competing interests: No competing interests
Dear Editor,
There are multiple lessons for healthcare professionals to take away from the research done by Compassion in Dying (1). This research highlights multiple changes that are needed improve the decision-making process for patients at the end of their life. These are challenging conversations and are harder with the increasing pressures on the NHS. These conversations need time and multiple people present (e.g. family members) which can be difficult to plan for.
There can be a lack of communication between patients and their families/next of kin about their wishes. As shown by this research this can have a large impact on the care someone receives at the end of their life as well as the grief that families/friends experience (1).
It can be daunting for patients to start ‘advanced care planning’ discussions and difficult for them to know how to begin them. When these conversations are started with healthcare professionals these can begin with the most challenging topics such as DNACPR/escalation wishes. If there was a way to create a gentler introduction to advanced care planning this may help the publics ideas about what advanced care planning is.
One of the recommendations is about ‘creating opportunities for people to record what matter to them’ (1). This also involves encouraging patients to begin talking to their loved ones about their wishes. Through encouraging patients to start these discussions through less daunting topics such as where they would want to die/whether they would like to be cremated, I believe it can create a safe environment for more complex discussions to be had. There can also be benefits for having these conversations away from a clinical environment as patients and families may feel safer in their own environment. There are an increasing number of resources out there to aid these discussions from a variety of charities including a ‘Planning Ahead’ document by Marie Curie (2).
Healthcare professionals need to aid patients to think about their own end of life care and help patients discuss and document these decisions with family and friends. This will improve patients’ autonomy and aid useful discussions with healthcare professionals.
References
1) Compassion in dying. Rethinking the UK’s approach to dying. https://compassionindying.org.uk/resource/rethinking-uk-approach-dying/
2) Planning ahead - Marie Curie. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-he... (Accessed: 17 September 2024).
Competing interests: No competing interests
Dear Editor,
If end-of-life conversations are to change it should be about helping the thousands get the specialist palliative care they desperately need. In 2017 HospiceUK estimated that 320 every day cannot access that care. That 118,00 a year figure will be even larger in 2024.
The charity Compassion in Dying may well want to change the conversation. However, it is the sister organisation of Dying in Dignity, who actively campaign for assisted dying. The fact that the two organisations share the same funding, offices and job descriptions implies that they share the same goals. No doubt both organisations would want end of life conversations changed to conversations about assisted dying and it is misleading to suggest that this is only about improving end-of-life care.
Competing interests: Provides content for www.kadoh.uk
Re: Better care at the end of life: we need to change the conversation
Dear Editor,
Augst paints a fictitious picture of a crisis in end of life care. Who says there is a crisis in end of life care? Who says people need to change the culture around death and dying? A few phone calls to some charity - do not mean anything. People call all sorts of charities all the time. Dramatising the terminal care landscape with a view to popularising a new mindset of "offering all the options" including euthanasia and assisted dying is an agenda driven activity.
Most people do not want an autonomous decision tree when they are dying - they want to be left alone to die peacefully. People do not want their deaths medicalised or taken from them. Their kith and kin know they are dying and the person if alert can read the body and emotional and verbal language, and know too that the end is nigh. Death doesn't need a decision algorithm to specific actions to be taken or not. It is a natural process and should be respected. The dying person needs support and not cognitive challenging, and needs time and space to process (if he/she is still capable mentally) this unique life event. Death is a sacred thing and should be respected and the dying person should be respected and not forced into making decisions they cannot grasp or distracting them from the very personal acceptance of death.
Palliative care, family doctor support and family and friends understand the dying person and their needs and have served the dying admirably to date. Why ignore and disregard a social service that meets most people's needs?
Competing interests: No competing interests