The NPR show and podcast 1A recently held a discussion with former radio personality Diane Rehm and medical experts, prompted by the news that former First Lady Barbara Bush had chosen “comfort care” in the last days of her life. Continue reading
end of life choices
“Hope can harm dying patients”: F. Perry Wilson on Doctors, Families and Misplaced Hope
Our humanity, as well as our caring nature, often calls us to be sources of strength and encouragement to those who are in crisis. This is true of Doctors, Chaplains, Nurses – in fact the whole hospice team. We hate to be the ones delivering bad news, especially when we feel like the other needs comfort rather than reality when reality most likely is going to be awful.
Dr. F. Perry Wilson, in a video report on MedPageToday, reports on a recent study concerning what doctors and surrogates believed a terminal ventilator patient’s chances of survival to be. The study found major discrepancies between doctors and families, and while doctors were often more accurate in their assessment that knowledge was rarely transferred to the families in the study. Families were often too optimistic regarding chances of survival. There were several factors involved in this, including religious belief or hope for a miracle, the need to not “give up”, and even magical thinking (“If I circle 50% it might be true”).
The study and analysis reveal how medical clinicians and supporters, including Chaplains and Social Workers, can reframe “hope” to mean hope in a peaceful death rather than hope for a full recovery.
One piece of the puzzle that was not addressed was that this unwarranted optimism could easily be seen as part of the grieving process for families. While education about realistic expectations is certainly necessary and needed, resistance to this advice in favor of “hope” shouldn’t just be written off. Denial, bargaining and magical thinking are part of the grieving process and may show that they are trying to wrestle with acceptance rather than avoid it.
Peter Singer, Blackmore and Weikart Discuss: Does Life Have Intrinsic Value?
For those of us in hospice settings, the notion of “quality of life” is very important. There is disagreement however concerning what or who actually gives that life quality. This podcast from the UK program Unbelievable? tackles both sides of the issue of what gives life value. Peter Singer and Susan Blackmore uphold the notion that life has no intrinsic value from a Creator, only from the value one derives from it, while Christian author Richard Weikart takes the opposite view. It’s a very good conversation with both sides taken seriously, and I was especially glad to hear from Peter Singer as his views are often shrouded in controversy. Click on the image above to be taken to the podcast page or click here. I hope you find it insightful.
Share your opinions below!
Problems With the POLST? Examining the moral questions POLST raises
“I talked with the Diocese and they told me not to sign it.”
This came from the husband of a hospice patient who was actively dying at the time, regarding the POLST or Physician’s Order for Life-Sustaining Treatment. Both were strong Catholics and she was a patient at a Catholic facility. Prior to this discussion I had spoken with their daughter about the POLST as he had some questions about it and advanced directives in general. I had provided some information regarding Catholic views on end of life care and decisions and hoped to follow up this visit. As I talked with him I was taken aback, because in my own understanding the POLST could not only reflect one’s intention to refuse certain care at end-of-life, but also to reinforce that one wanted full measures to be taken to prolong life if that was their wish. It seemed like an overreaction to be told not to sign it at all.
While I was more familiar with other kinds of advance directive (AD) forms I was less acquainted with the POLST, so I decided to look and see what the fuss was about.*** Continue reading
David Mills: Death Dignified by Christ
I’ve been trying to write a post about the “death with dignity” movement, but found it very difficult to write something that didn’t turn into a book.
While there has been a great deal of discussion about the rightness or wrongness of physician-assisted suicide and euthanasia, I’ve found less discussion about what “dignity” means in this context. I found this post by David Mills and wanted to share them in regards to what it might mean for a Christian to die with dignity. The biggest takeaway may be that while one side sees neediness, exposure and helplessness as antithetical to human dignity, Mills sees these at the very heart of Jesus’ own death. His attitude towards the indignities placed upon Him actually made His death more dignified. It’s a lesson we can take away as we seek to conform to Christ.
He was a dignified man suffering all the embarrassing ways cheerful young women the age of his granddaughter deal with the body’s failure as cancer begins shutting down the organs. Dying in a hospice, you lose all rights to modesty as you lose control of your body.
A. James Rudin: Clergy education for end-of-life questions inadequate
Rabbi A. James Rudin recently wrote about the growing need for clergy of all faiths to be prepared to help those dealing with tough choices related to end of life care. He asserts that often the questions being asked at the bedside of the dying are not as much related to deep metaphysical questions but are much more pragmatic and ethical:
Rather, [the] questions, usually asked in a hospital room, go like this. “My beloved family member is gravely ill. The doctors are recommending some extraordinary and complex medical treatments. I am confused and I am being asked to make a decision. As my spiritual leader, please tell me, what should I do?”
Unfortunately many clergy are not provided much opportunity for education in medical ethics and how it relates to their particular faith. Some denominations require some clinical pastoral education which, depending on the training center, would provide invaluable insights into the day-to-day decisions encountered in trauma units and hospices. But this represents only a very small group of those in ministry training, and an even smaller percentage of those currently in ministry. Other seminaries offer courses in medical ethics, but these are almost always elective. Because of these deficits, Rudin concludes:
Medical science and technology will move forward with or without the religious community. Major decisions about health care in the U.S., including the staggering question of withdrawing and withholding life support systems from desperately ill or comatose patients, will be made with or without the “benefit of clergy.”
If the best thinkers within our faith communities do not address these issues in a thoughtful and informed way, others will decide for us, and that would be an abdication of religious leadership. If that happens, rabbis, priests, pastors and imams will have no one to blame but themselves, and worst of all, desperately ill patients and their troubled families will be the losers.
What has been your experience as a minister or as a chaplain? Did you have adequate training to help others cope with complex end of life issues?
Religious positions on end of life care: BBC News
I picked up the following from the BBC while doing a bit of research in medical ethics:
End of life care: What do religions say?
With figures showing that many people around the world die painfully due to scarce access to morphine, the World Health Organization is calling for improvements to end of life care.
But even when pain medication is available, the end of someone’s life is often an immensely difficult moment for all concerned. So for those who believe, what guidance can religions offer in a person’s last moments?
At first glance the words ‘good’ and ‘death’ might not seem compatible, yet most of us will have reflected on how we would like to depart this world, if given the opportunity to choose.
While the proverbial scenario ‘at home, asleep’ might unfortunately not be attainable for everyone, it does give a sense of what the ‘ideal’ death might look like: peaceful, pain-free and dignified.
Rabbi Yehuda Pink, convener of the West Midlands Jewish Medical Ethics Forum, says that traditional Judaism gives life infinite value, as humans are created in the image of God. Therefore, an hour, a day or a week of life has as much value as a year or ten years.
The challenge, says Rabbi Pink, comes when we need to determine whether we are preserving life or prolonging dying.
“There is no obligation to prolong the dying process, quite the opposite,” he says. “We need to ensure that people don’t suffer pain, so palliative care serves a very important role in Jewish beliefs.”
Similarly, Christianity, Islam and Buddhism see looking after the ill as a core value. Dr Desmond Biddulph, president of the UK’s Buddhist Society, says that Buddhism’s First Noble Truth recognises that death is suffering but not unexpected. Buddhism teaches to accept death while still recognising that life is precious, but no particular advice is given in terms of end of life care.
While healing miracles appear in the Abrahamic faiths, palliative care is generally not seen as giving up on God’s powers. Rabbi Pink explains that Judaism views medicine as a partnership with God, who has hidden within nature the ability to do many things: “Unveiling and unleashing the potential of medicine is actually a declaration of faith in God,” he says.
However, he says that pain does not have an intrinsic religious value in traditional Christianity: “Pain can be used by the person in a spiritual way, but pain does not equal close to God.”
‘Angels and prophecies’
The meaning attributed to suffering can differ from patient to patient. Dr Jonathan Koffman, lecturer in palliative care at King’s College London’s Cicely Saunders Institute, has researched the role of religion and spirituality at the end of life.
His observations of London’s Afro-Carribean communities show how religions have developed a very strong framework for “making sense of the inexplicable”.
Dr Koffman stresses the importance for doctors to communicate with their patients and to understand that a person’s beliefs, levels of religiosity and ways to respond to illness can change. For example, some patients may have prophetic visions – such as an angel – which, despite evidence to the contrary, convince them their conditions will improve. These visions, which are deeply rooted in the patient’s belief system, can affect their end of life medical decisions.
Moreover, some patients may interpret pain in a religious key: “Some may ascribe pain to being a test of their religious faith, or divine punishment,” he says. “And in some instances they may refuse [pain relief], because they have to bear that suffering.”
A similar view can be found among some Muslim faithful. Imam Yunus Dudhwala, head of chaplaincy at Barts Health NHS Trust, says this belief comes from a saying of the Prophet Mohammed which hints at difficulty and pain as a way to expiate sins. Hence, some patients may be reluctant to take pain relief.
Intentions and results
Another reason some might refuse strong pain medication, explains Imam Dudhwala, is that in some cases it may hasten death. This is one of the many ethical issues surrounding end of life: that medicines used for a positive purpose, relieving pain, might have a negative effect: the death of the patient. The doctrine of double effect is often cited in these cases to support one argument over another.
Rabbi Pink says in these cases effects and their likelihood should be looked at carefully: “If the administration of the pain relief would have such severe effect, like to almost certainly kill the person, that would clearly be forbidden. For example, euthanasia is certainly not allowed in Jewish terms.”
Intentions have a very important role in the Buddhist approach too. Dr Biddulph explains that karma is created through selfish actions. Discussing hypothetical scenarios of individuals having to take medical decisions for a patient, he says not taking into account the best interest of everyone involved in the situation might affect karma.
Withdrawing hydration and nutrition from a patient can be controversial. In general, religions agree that they do not constitute treatment, but basic human requirements. Rev Dunn says that in some particular cases they have been reduced or withdrawn because, as the body begins to close down, it stops processing food and fluids, and forced hydration and nutrition can be very painful.
So the focus is on a humane death and, perhaps, the opportunity to say the last goodbyes. While some families are reluctant to tell a loved one that they are dying, according to Imam Dudhwala, the patient has a right to know, because “it’s their right to prepare for what is coming, whether it’s writing a will, or preparing to meet their Creator.”
Rather than prescriptive advice on medical treatment, faiths aim to offer a framework to approach and make sense of death. Rev Dunn suggests: “making a will, making sure your affairs are in order, making sure your relationships are reconciled, thinking about organ donation.” To make sure that, in the darkest of days, some solace can be taken in knowing that nothing was left undone.
Faith and Dying Well
I recently came across an article on a Christian site discussing why it is that Christians seem to have so much difficulty with end of life choices such as hospice care (unfortunately I can’t link to the article right now as I can’t find it again).
As a hospice chaplain for seven years I can say the following:
- most of my patients and families have some kind of faith background, and I would guess that it is about 90% Christian
- about half of my Christian patients are Roman Catholic
- of those that can tell me, most of my patients are not afraid of dying and neither are their families.
That said, I would say that obviously not all Christians die poorly, and a good number are quite accepting of God’s plan and, even when there is a very real fear of the dying process, that fear is tempered by the hope of Heaven.
However this is only a sample of those who have already chosen hospice. It would stand to reason that patients and families that are in some way afraid of dying or the dying process don’t consider hospice at all. One would think that this group is mostly atheist/agnostic and so on, but I don’t think that’s the case. I’ve had atheists on service before, and they look at death as a release from their pain and struggle and accept it as part of life. On the flip side of the coin, there are many Christians who struggle with decisions at the end of life and hang on even when recovery is impossible. The “why”s in these cases are plentiful I’m sure, but faith itself itself can be one. Continue reading