What To Expect From Death Itself, and Opportunities for Patient Partnering

I remember vividly, from when my sister was dying back in 1997 in the second hospice in the world (link to my parents’ book full text),  how important it was to my mother that when asked what she feared most, she was able to say “the death rattle” and that Dr. Robert Twycross was able to reassure her both of the insignificance of the sound, and that he would in any event make sure that it did not occur.

So, I found a new article by Doctor Sara Manning Peskin in the New York Times particularly powerful and empowering. Under the headline The Symptoms of Dying, Dr Peskin first points out that as the “letting go” gets closer, deaths become more and more similar.

You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

And, PLEASE PLEASE, note that last sentence.  Only a couple of days ago, at dinner at our retirement community, it turned out that several of our friends, informed, educated, with great access to services, still had no confidence that they would have a “good death.”

The article  (which is the first of two) then goes on to outline those various stages and symptoms the body may face: The Death Rattle, Air Hunger, and (the wrongly named) Terminal Agitation, and how they are addressed.

I guess the reason I find this relevant to patient partnering is that I think it is really important for anybody facing serious illness to be given information about all of this as soon as possible.  Having that on the table — or at least the general reassurance that it can all be managed when the time comes, will just make it far easier for an honest cooperative partnering discussion about whatever else needs to be engaged.  My guess is that most of those providing care will also become more relaxed when they know that patient and family want to know what will happen, and are willing to share their worries and have them addressed.

A Study of Why People Choose Assisted Suicide Has Important Lessons for Patient Partnering

An important article in the Washington Post should trigger some thoughts.  As the article explains:

But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

The study, based on information from Canada’s University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

“It’s what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto. “Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.  .  .  .  One of the main things these patients bring up has to do with “autonomy.” It’s a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.

The article cites several other studies that come to similar conclusions.  My first thoguht that the pain issue is easy to grasp, and a clear and dramatic focus of fear for anyone who thinks about it.  My own, perhaps overoptimistic view, is that it is a very rare case in which pain can not be satisfactorily managed provided you have access to the right experts.

But it is not the case that giving people a reason to want to live is viable for everyone.  It depends on the person, on what gives them identity, purpose and satisfaction.  If that is taken away, why on earth stay here, unless you are forced to.

When my sister, back in 1977, when given the news that (at 25) she was indeed dying of melanoma, and quickly, she asked our family physician what would happen if she asked for help dying.  His response has stayed with me all my life:  “That would mean we had failed you.”

That response works at the pain level, but it obviously works at the purpose and satisfaction level.  I would suggest that those dealing with those of us in decline should think about how to start conversations on what provides that satisfaction — and what might provide it as capacities decline.  Hopefully there is then time to learn to take please from things that have not previously given the same pleasure or purpose.

Indeed, the earlier the discussion starts, the better, and it should not be put off until the only short term outcome is death.

 

The Implications of Teaching Death Ed in Schools

A recent article by Jessica Nutik Zitter in the New York Times discusses the begining of what could become a trend to engage students with issues of death and dying during high school.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life.  .  .  .

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.  .  .  .

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

After teaching the kids how to play ” Go Wish” a card game designed to help bring out the students own preferences:

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.

Let me suggest that this is perhaps the very best way to encourage patient partnering, not just at the end of life, but throughout it.  Those who take “death ed,” will have had experience talking about the realities and about choices from an early age.  They will have considered values and the different roles of health professionals, the family and the patient.  They will be more willing to ask questions (at any age), to empower others to ask questions, and to object when those questions are not appropriately responded to.  I suspect that in many families the students will end up as the facilitators of these difficult conversations because others do not yet have the skills to start them.

I would love to see some follow up studies of those who take these classes and whether they become better at communicating with their own medical professionals, even in the short term.

I would also like to see hospitals and clinics seeing it as part of their mission to expand these kind of discussions into a wide variety of institutions.  I would only also emphasize that it would be a massive lost opportunity if the discussion was limited to the death process.  The truth is that all the same issues lurk in many health processes.  It is just that the issues are much starker when death is on the table.

Thoughts on What We Ask of Our Doctors When We Reject Aggressive Cure Attempts

I have been thinking a lot in the last couple of days about what burdens we put on our physicians when we reject aggressive interventions.

Obviously, I am speaking very personally here, based on my deep reluctance to have a bone marrow transplant for my MDS bone marrow cancer.  So this should not be projected directly into other situations, although maybe it is worth thinking about, and even discussing with medical team members.

It is almost easy for me to proudly declare that I am not going to give into medical system pressure, and am looking for quality over quantity of life.  But when I started to put myself in the team’s shoes, it came out like this:

“I am asking you to not deploy the best technology you have to lengthen my life.  That means that you will “fail” at what you have been trained to do, to fight all the way, or at least all the reasonable way.  You will have to watch me die, and try to make that as bearable as possible, all the while knowing that maybe that could have been prevented.  You already know, from your experience, how hard it is experience, and how hard it is to watch.  Moreover, I am asking you to run the risk that later on — too late — you will change your mind.  Or maybe you will just suspect that I have changed my mind, and you will wonder if you had presented information differently, maybe we would not be in this place.”

That is a lot to ask, particularly for those trained in the current governing ideology of medicine.

It does definitely not mean that as a patient, I should not do what I want to be nice to my doctor.  But it does involve an obligation to be sensitive to the impact.

We need to remember that the duty to take care goes both ways in the patient-doctor relationship.

 

NQF Advanced Illness Care Strategies Webinar On March 15

The National Quality Forum Issue Brief, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care, which was issued late last year after work involving a large Action Team, brings together six different areas of need and discusses the relationships between these six areas of need and their components.  It is a major advance in expanding understanding that those facing serious illness have to deal with far more than the pain/consciousness choice and the quality/quantity choice, they also have to engage with all kind of other pressures, many of which have in the past hardly been dealt with by the health care system.  This is not just about end of life, but about all those facing serious health centered challenges.  I discussed the Brief in some detail here. (Disclosure: I provided some input and help NQF with presentations about the ideas, doing so from a patient partnering point of view.)

The areas are well shown in this chart:

advanced-illness-care-graphic-1016-01_fotor

Just looking at the list will convince you that any solution that fails to address all of these areas can not be said to be person-centered, because it is at best centered on only apart of the person, rather than all of them.Moreover, failure to address any of the six will obviously undercut all of the six, not just the one explicitly not covered.

The next step in making the vision behind the Brief a reality is a March 15 webinar.  This webinar (sign-up information below) will delve into case studies which demonstrate how physicians, nursing homes, home health agencies and others can integrate the preferences in this chart into existing quality efforts.

For some, hearing about these examples may be much more practical and realistic a way of thinking about moving forward than the more analytic approach in the paper.  Others may find the combination of examples and analysis the most empowering of all.  Indeed, the Brief itself does include some brief “snapshots,” examples of innovation in practice.

As the Issue Brief concludes:

Building on the movement towards person- centered advanced illness care, the time is now to bridge medical care, social services, and community assistance to form a stronger support network for individuals with advanced illness and their families and caregivers.

The webinar it a great place to start plugging in to this network.  You can register for the Webinar here.  Not to be missed.

 

 

Do We Need Specialists Within Specialties Focused On Particular Life Goals For Those Dealing With Serious Illnesses?

Here is an idea.

Particularly with long term diseases, the treatments chosen and needed may well very significantly by values and life choices.  For example, there is the dimension of pain versus awareness and communication capacity.  There is the dimension of quality of life versus quantity of life.

Moreover, as we get to understand the choices we have to make, the question of what would provide quality starts to become more and more nuanced, regardless indeed of where they put themselves on the quality/quantity continuum.

For example, for one one person it might mean staying physically active for a long time.  For another it might mean being mentally active.  For another staying emotionally connected.  For yet another being productive (getting things finished.)  For another it might mean being happy.

As of now, those specializing in serious diseases are better and better at finding our what people want.  And specific disease experts are getting better and better at treating particular problems.

But since some people with, for example, a potentially painful cancer care most about staying active physically, and others about being intellectually productive, maybe they need different treatments, and perhaps, as the science develops, different experts with different knowledge and connection to emerging research.  (To a certain extent, the development of an expertise in palliative care is a recognition of these insights, although to the general public, that is generally associated with pain, rather than other goals.)

Similarly, for one person with Parkinson’s, the goal might be to be able to keep writing.  For another it might be keeping out of pain.  Again not only might the treatment need to  be different, but so ultimately might be the needed expertise.

I realize that creating such new kinds of specialists runs the risk of an ever greater fragmentation of care.  But surely the right way to think of this is to realize that as the risk of fragmentation becomes greater — as it will in any event — the need for coordination, navigation, management, and communication becomes greater.  That problem has to be solved anyway.

Moreover, at the risk of restating the obvious, the patient partner team approach helps guarantee that the patient articulates and communicates what they want — and then gets it.

 

Mutual Respect For Patient and Professional Autonomy

Dr. Robert Twycross was my sister’s doctor at the end of her life (link to my parents’ book) in the Michael Sobell House Hospice outside Oxford way back in 1977.  He then worked closely with my parents in all their work on hospice worldwide, and remains a family friend.

When I engaged him in discussion about patient partnering, he pointed me to this very helpful language from his book, Introducing Palliative Care, the most recent edition of which is co-edited with Andrew Wilcock.

Partnership

When considering autonomy, the recent focus has generally been on the patient, partly because of a revolt against medical paternalism. However, a more nuanced interpretation embraces the autonomy of both patient and professional. Thus, in practice, shared  (‘principled’)  autonomy  means  partnership  between  patient and professional. Both are experts: the patient in relation to the impact of the illness on their life and family, and the professional in relation to clinical evaluation and treatment options.

Thus, autonomy does not mean simply doing whatever a patient requests, as this is an abdication of one’s professional role. When there is persistent disagreement and a doctor still believes a certain treatment is inappropriate, they should iterate their reasoning and assist the patient in obtaining a second opinion.

Conversely, in the UK and many other countries, a person is not legally obliged to accept a clinician’s treatment recommendation, even if refusal results in earlier death.

However, most patients want partnership, and are generally happy to accept professional advice. Consequently, doctors have a legal obligation to discuss treatment options and their implications with patients, taking their values and wishes into account, and to obtain informed consent.

Without consent, a doctor risks being found guilty of assault.9  Likewise, ignoring the views of patients can lead to breaches of the law.  Good communication is crucial to avoid misunderstanding. [References omitted.]

He also referred me to Stirrat & Gill, Autonomy in medical ethics after O’Neill.
J Med Ethics 31:127-130 (2005).

We believe that the individualistic version of autonomous choice is fundamentally flawed and that medical ethics should always be set in the context of relationships and community.5 We suggest a principled version of patient autonomy that involves the provision of sufficient and understandable information and space for patients, who has the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We consider that this model best fits the optimal patient–doctor relationship in which there is a mutual, unspoken agreement between the parties that recognises the duties and obligations each to the other.23 Bilateral trust is at the heart of this relationship. [References omitted.]

Parenthetically, the American in me recoils from the description of the relationship between the parties as “mutual and unspoken,” or rather from the word “unspoken.”  The Brit in me understands so well why it is there.

More generally, however, I find these descriptions particularly helpful in underlining that each member of the team brings something different, and that together the optimum decision is reached reflecting the medical team’s knowledge, skill and even wisdom, and also the patients knowledge needs, hopes and realities.  As Robert says, all are experts, and all should respect each other both for that, and as human beings.  For what is is worth, in one of these discussions, when my oncologist simply said to me (spoken, not “unspoken”): “I respect you,” it meant a lot.