Is palliative care having an existential crisis?

Is palliative care suffering from “chronic niceness”? What is its future? Lucy Selman, Libby Sallnow, Ros Taylor, Seamus O’Mahony, and Richard Smith discuss

This discussion began with a review in the Lancet of With the End in Mind, a much praised book by Kathryn Mannix, a palliative care physician. The review was by Seamus O’Mahony, a gastroenterologist and author of The Way We Die Now, another much praised book. O’Mahony characterises Mannix’s message on dying as “there is little to fear and much to prepare for,” whereas the message in his book might be summarised as “death cannot be tamed, and many deaths, particularly those in acute hospitals, are terrible.” After reading the book and having the experience described below, O’Mahony asked in an email to Richard Smith, if palliative care had an existential crisis.

Seamus O’Mahony wrote:

“I once believed that palliative care existed in a parallel universe to the rest of medicine, a universe where people were nice, where carefully chosen words and cups of tea could resolve any difficulty. I was disabused of this fantasy when I gave a talk at a hospice a few years ago, about end-of-life care in acute general hospitals. These hospitals do not provide the ideal environment for the much-touted “good death”, but in both the UK and Ireland, people are still far more likely to die in a general hospital than in a hospice. As I talked about the conflicts that sometimes arise between the families of dying patients and doctors in acute general hospitals, I added—almost flippantly—that, of course, such disputes didn’t happen in the peaceful and holistic hospice, a remark which caused my hitherto silent audience to erupt, opening a flood-gate of emotion.

Emboldened by the absence of the two consultants, the audience (nurses, chaplains, social workers, and junior doctors) told me—poured out their hearts would be more accurate—about abusive relatives, deluded patients, even threats of litigation. I expect conflict in the chaos of the general hospital where I work, but here? In this lovely building made of glass and blond wood, with all the plants and running water? I was reminded of the chaplain Peter Speck who wrote about “chronic niceness” in hospice care: “There is a collective fantasy that the staff are nice people, who are caring for nice dying people, who are going to have a nice death in a nice place. This protects everyone from facing the fact that the relationship between carers and the dying can often arouse very primitive and powerful feelings that are disturbingly ‘not-nice.’” The prohibition against expressing such feelings, he argued, can contribute to emotional exhaustion and burnout.

Richard Smith (who is chairing the Lancet Commission on the Value of Death) shared the review with Lucy Selman (a researcher into end of life care), Libby Sallnow (a palliative care physician who promotes community care of the dying and grieving), and Ros Taylor (a palliative care physician), asking if they thought that palliative care had an existential crisis. Here is the conversation that followed among them:

Lucy Selman answered:

I find the review (and the idea that palliative care is having an existential crisis) puzzling. Mannix’s book is aimed at alleviating fear of dying in the public and encouraging more conversation about death and dying. It’s not meant to be a description of what it is like to work in a hospice or a hospital palliative care team. 

Seamus’s equation of her clinical skills with “tea, some cognitive behavioural therapy, and serene presence” is quite patronising—does it really sum up a medical specialist in pain and symptom management? 

“Chronic niceness” I understand as a dysfunctional way some people working with the dying (or the abused, disabled people, etc) cope with the difficulties of their work. It’s a form of hiding behind a professional front in order to protect yourself from experiencing and showing vulnerability. Hiding behind professionalism is rife among clinicians (and academics) of all types. Undoubtedly, chronic niceness can be damaging and could pervade an organisation, but I don’t see its existence as signalling an existential crisis in palliative care. I have heard plenty of palliative care staff in hospitals and hospices talk about the challenges of their work and the nitty gritty of dealing with complex families.

Richard Smith responded:

I have observed that at least some general physicians and GPs are scornful of palliative care. The ones I’m thinking of are all male, and I’m fascinated that about three quarters of palliative care physicians are women. (In November 2017, 608 of the 773 doctors working in palliative care in the NHS in England were female.)  

I remember too learning at business school that when a profession turns from being predominantly male to predominantly female its status declines. Look at medicine in Russia.

Does death being predominantly “women’s business” prompt a horrible cocktail of misogyny and stigma?

Then there is the question of whether palliative care wants to grow as a specialty or to disappear after ensuring that its competencies become embedded in all those who care for the dying, including informal carers. I’ve heard both views expressed.

Libby Sallnow responded:

The concept of “chronic niceness” is interesting. I would say much of this resides in the external perception of palliative care as Seamus alludes to), and promoted by those in the specialty. We have tried to legitimise ourselves by defining a new type of care and central to this is a behaviour—a holistic, compassionate approach—rather than just an outcome of care. Few other specialties define themselves by their behaviour rather than the outcomes of care they deliver. 

This has stemmed, I’m sure, from the early hospice movement which depended on local donations and support: the movement had to be careful with its public image, again unlike other specialties that are centrally funded because of their recognised value. 

In my experience, having worked across community, hospital, hospice and academic teams, I would say that chronic niceness rarely exists within the teams. Rather people can be angry, frustrated and overwhelmed, but attempting to bring compassion to these situations..

Palliative care does not seem to have permission to act in ways that are other than “nice.” And I think the perception of “niceness” is predominantly external. When I try to explain to GPs that I am not accepting a patient because they have no specialist needs: “But you’re palliative care, you don’t say no to patients.” 

And patients expect that when we become involved we take over everything, arranging meals, visas, washing, dressing, funerals.

The public and professional image of the specialty is nothing like the specialty in reality, and palliative care was guilty when it started of fuelling this image to gain legitimacy, approval, and funding.

Another issue is that people conflate palliative care (medicine) as a specialty and service and “end of life care” as a societal/clinical/family/community response to dying, making palliative care services responsible for everything when clearly they cannot be. Recognition of this impossibility has led to newer movements such as a public health approach to palliative care and compassionate communities, which remind people that death is primarily a social event and not one owned by professionals or hospices. 

Reframing death as a social issue could bring huge benefits but can have unintended consequences. Caring in the community is highly gendered with women providing the majority of care. “Communities” caring at the end of life often means women.

Compassion and niceness overlap. Whether it’s called compassion or niceness, it is missing from much modern healthcare. Although it may seem insignificant, I started all consultations in casualty as a junior doctor by asking if I could get the patient a cup of tea—and it radically changed my consultations. It immediately placed me as a servant, supporting the patient who was the key person in the consultation, rather than the other way round; it acknowledged them as a person rather than a body in a gown. 

Columba Quigley, a doctor who left palliative care, has described how it was the rise of evidence based medicine, Cochrane reviews, and the relentless quest to build an evidence base similar to oncology that caused her to be disillusioned. For me this same concern led me to be interested in compassionate communities. At its heart is the difference between good symptom control and supporting death as a social experience. The problem is that palliative care, and others, have conflated the two—one is manageable by the specialty, but the other is not.

GPs, hospital teams, and society seem to feel that all death and dying must be taken over and managed by palliative care. I think we need to separate the part that can be helped by health care services (complex pain, sickness, setting up syringe drivers, etc) and the part that is our own responsibility in whatever role we may have. I think that our death anxiety is what has led to a desire for palliative care to take over all of dying and make it invisible. 

Ros Taylor wrote: 

We are definitely not “nice.” We talk about terror, death from no breath, fears, tears, incontinence, estranged children, and no money for a funeral—and that was just two patients today. But we are “kind,” as is illustrated by Libby’s cup of tea. Maybe nice has been conflated with kind?

These small kindnesses obviously exist in the busy hospital—but they get submerged by the chaos. That’s why I would like to shift some of the 100 000 volunteers who support hospices into hospitals and care homes. To help people through the bewilderment inherent in today’s institutions.

Hospices have certainly set the tone with their attention to environment: enough pillows, a view of nature, etc, but this is not scalable. A patient today told me that someone took her pillow while she was asleep in the local hospital last week. Now the same patient has six pillows in the hospice. It made talking about the terror easier.

What is the minimum dose of kindness to support safety and trust in a hospital?

I agree there is an existential crisis in palliative medicine … and in hospices. Saying no when medicine offers ever more can damage individuals and organisations, but we have to say no if death is going to become an acceptable option in the West. 

Palliative care should not seek to own death. The biology must be shared with primary and secondary care, whereas the social sequence of losses, the need for inclusion and support as we age and fade is not something that the palliative workforce should or is capable of owning. But I do want the biology, pain, bleeding, and symptoms managed with competence and confidence.

Lucy Selman wrote:

It’s an interesting question whether palliative care aims to “do itself out of a job” by being incorporated into the rest of medicine or to grow as a specialty. This relates to Libby’s point about palliative care being a behaviour. It is also reflected in the now widely used division into specialist and generalist primary care:  generalists do not specialise in caring for the dying but provide the basics of a palliative care approach (with training where needed) and call on specialist palliative care for complex cases. These generalists will often be specialists in other disciplines—renal medicine, oncology etc. 

The question of whether palliative care should be “absorbed” or grow as a speciality comes down to whether other specialities, including general practice, are willing and able to absorb a holistic, person-centred approach to care of the dying. Evidence so far suggests not.  

In my view it doesn’t matter who meets the needs of the dying as long as those needs are met. Unfortunately medicine doesn’t care well for the dying—poor communication and avoidance of talking about death are rife, as is aggressive, unwanted care at the end of life.

I’ve thought about Libby saying that GPs, hospital teams, and society seem to feel that all death and dying must be taken over and managed by palliative care. I don’t doubt this is sometimes true, and I have interviewed palliative care specialists who describe other specialities “dumping” complex cases—for example, family disputes and cultural and language differences—on them because they are time-consuming. But I have also encountered GPs and some hospital clinicians who are protective of their role in caring for patients at the end of life. For some, this is a great privilege and one of the reasons they became doctors, so they don’t want palliative care specialists’ involvement. Whether they are just as able to meet patients’ needs as a palliative care team depends on what those needs are and what skills the clinician has.

But to return to the original question, I am not sure that all of this points to any more of an existential crisis in palliative care than in other specialties or indeed medicine itself. I’m also wary of embracing the idea that palliative care is having a crisis—end of life care needs more investment and respect, neither of which are likely to arrive if palliative care is presented as in crisis compared with, for example, the more robust and self-confident oncology. There is a hierarchy in hospital medicine, and palliative care is near the bottom.

Palliative care as a speciality seems to be almost unique in how self-reflective (and self-deprecating?) it is. I wonder if this links to the gendered nature of care and the predominance of women in palliative care—plus of course the way that essential “softer” skills (kindness, compassion, communicating skilfully) are belittled or at least not sufficiently respected in medicine.  

Richard Smith wrote:

I want to share the experience of my friend Mary, whom I met on my first day at medical school.

She had metastatic breast cancer diagnosed eight years ago—at age 57 (or thereabouts). I saw her at a poetry reading recently, and she reminded me that what helped her—and helps her to this day—was a Buddhist monk, who said to her while laughing: ‘Very bad time now to identify with body: body falling apart.’”

She has written a book. “Well,” about her experiences. I wrote about it for The BMJ, and this is the relevant section:

“Lama Yeshe was most helpful to Mary when her cancer returned. She went to see him in a state of terror, thinking that she was likely to die soon. “Lama Yeshe, I feel as if I have a hand grenade inside my chest . . . it’s terrifying.” To her surprise he responded by describing the major problems he too had in his own ageing body and then “Gesturing to our two, definitely no-longer perfect, bodies, he burst out laughing—his shoulders shook with it—and said, ‘Very bad time now to identify with body: body falling apart.’”

It’s impossible to imagine a doctor responding in this way (he or she might be struck off for such a response), but it was a liberating moment and a turning point for Mary. She understood that she had been identifying too much with her body, failing to recognise that she is much more than her body.”

Lucy Selman wrote:

Palliative care’s consideration of social, spiritual and psychological needs (reflected in the team approach) sets it apart from other specialities. Years ago I spent a year in India doing palliative care research and studying yoga/meditation (yoga means ‘stilling the fluctuations of the mind’ and meditation is fundamental to this). I was struck that when I asked at palliative care centres what provision was made for spiritual care a common answer was that on certain days yoga/meditation teachers would come and run sessions with patients.

Years later in San Francisco I trained in contemplative end of life care—based on teachings in The Tibetan book of Living and Dying and volunteered with Zen Hospice. There is much we can learn from these non-Western approaches to death and dying (which guard against identification with the body and advocate attention to our mortality). Also fundamental is compassion, and how does compassion relate to niceness? Compassion is not just empathy but motivation to action. 

Richard Smith wrote;

This is what I take away from this discussion.

  1. It’s good to question what you are doing. The day you stop doing so is the time to go and do something else.
  2. In that sense “crisis” is a good thing, but it’s an emotive word, holding the prospect of collapse, and perhaps best avoided.
  3. I don’t think that palliative care is in anymore of a crisis than health care, medicine, or most specialties. Seamus started this, and his book on medicine shows that the “crisis” in palliative care is as nothing compared with the crisis in medicine. The title of his book is Can Medicine Be Cured? and the answer is “no” without some sort of collapse.
  4. I can’t see that it makes any sense for palliative care to try and take over all of dying. It’s obvious to me that the more palliative care can spread its skills and attitudes the better. The question is how best to do that?
  5. The choice between body, spirit, and community is a false choice. Palliative care has to be about all three. The questions are how much resource to put into each and how best to approach them. Consultants should, I think, be more leaders, teachers, innovators, and advocates than practitioners, although it’s important to keep practising.
  6. We know that diversity is a good thing, leading to more creative thinking and better problem solving. It has to be a problem for palliative care that it’s so female dominated and so not as diverse as it might be.
  7. Stories and symbols are hugely important, and the picture of Libby serving tea to patients in casualty is very powerful. “I’m not a leader I am a servant,” said Nelson Mandela. Gandhi thought that the highlight of his life was caring for a dying relative. But I suspect that serving tea came naturally to Libby. Would it work if done with a bad grace because it was mandated? I fear not.

Richard Smith was the editor of The BMJ until 2004 and is chairing the Lancet Commission on the Value of Death.

Lucy Selman is a researcher into end of life care.

Libby Sallnow is a palliative care physician who promotes community care of the dying and grieving.

Ros Taylor, a palliative care physician.

Seamus O’Mahony, is a gastroenterologist and author of The Way We Die Now.

Competing interests: O’Mahony, Sallnow, Smith, and Taylor are all members of the Lancet Commission on the Value of Death.