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.


New Hopkins YouTube Video, Patients on “What I Wish You Knew…Sharing Perspective from the Bedside,” Has Many Potential Uses

The new Hopkins video on the expectations of patients will be a powerful tool.  As the link says:

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?

As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are.  Respect, communication, and partnership.  Of course, the process of gathering these ideas was itself an important clarifying project.

It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff.  I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients.  Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.

We certainly spend time in waiting rooms, when we might be watching videos such as this.  Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.

Figuring Out the Subtleties of Using Statistics in Serious Illness Discussions

It seems to me that one of  the hardest things about serious illness discussions for the patient-professional team is figuring out how to think and talk about statistics.

This weekend I have been struggling to understand an article in the New York Times about this, headlined, I Had a 9 Percent Chance. Plus Hope.  The paragraph below  is, for me, the hardest to understand:

My surgeon refused to predict my future and told me to ignore my survival odds, which were a low 9 percent. He pointed out a cognitive error that people make when looking at statistics. If you survive, he reminded me, you’ll survive 100 percent. No one survives 9 percent. No one is 9 percent dead.

The numbers that matter are 0 and 100, dead or alive. To make an analogy to a commonly cited statistic, 50 percent of marriages end in divorce. There’s a part of the brain that therefore mistakenly believes all marriages experience 50 percent worth of divorce, making that number seem relevant to all couples, when it isn’t. For the happy couples, it is irrelevant. That meant that if I survived, it wouldn’t matter, looking back, whether I’d beaten chances of 9 or 19 or 90 percent.

I really did not understand.  What is the “cognitive error” here?

My family tried to explain by telling me that there is a difference between the use of statistics in making decisions about treatments, money, etc., and their use in living once the decisions are made.  While it makes all the sense in the world to know and use statistics to decide whether to use one or another treatment, or indeed whether a treatment attempt is best chosen or rejected, much of living that then happens does so without a focus on the survival numbers, it was suggested.  Or rather the family thought that that was what the writer was saying.

At first I found the distinction both persuasive and helpful.  And I certainly agree that numbers play very different roles in different situations and for different people.

But the more I thought about it, the less this makes overall sense.  As someone with an four to five year life expectancy because of bone marrow cancer, every experience in life, as well as every decision I make, is colored by that knowledge.  Its not just that it influences a decision abut whether oral surgery is worth the time disruption, effort and pain.  It influences my feelings about family holidays, seeing friends, and even politics, to put those in the context of a timeline and life expectation.  How can it not.

To put it another way, following the construct in the article, if your survival expectation is 100%, then each event is lived with that awareness and has a particular nuance.  If it is 0%, then it has a very different nuance.  Most importantly, if it is 50%, or any number between 0 and 100 then each event has bits of both sensibilities with an awareness of every possibility.

For me, at least, the only way I can live with the reality of constant risks of sudden change points, particularly when tests are done, and with knowledge that there will be inevitable bad news sometime, is to not to always find good or bad news with each test.  That only puts you on an emotional roller coaster.  I try to see it as a long process with gently smoothed ups and downs, gliding in the end, as with all roller coasters, down to a hopefully gentle stop.  For me, being aware of the stats, and of how they move for me, helps smooth the process out.  When there is potentially bad news, well, we knew that would come in the end.  When there is good news, well, that’s only for a time.

Most generally, I do conclude that different patients want, need, and can use very different information.  The doctor has to be able to figure out what will truly help the patient, and how to give it.  That may or may not be identical to the patients initial articulation.  On the contrary, the patient’s statement may be driven by a very different fear than that of actual knowledge about what is likely to come.  While the professional must respect and engage with the patient’s articulation of what and how they want to know, they have to recognize that that choice might change after honest joint exploration.

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.


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.

When a Patient Says “Do Not Give Up On Me”

I was involved last week at a meeting of all the Patient and Family Councils at Hopkins in a fascinating conversation about the subtle and not always understood messages that patients and medical staff exchange about the future.  What, one asked, does it mean when a seriously (read terminally) ill patient says, begs really, “Please do not give up on me?”

Obviously, it depends on context, but I suspect that physicians may well hear this as “Do not stop trying to cure me,” when in fact it may mean a wide variety of things, of which these are just a few:

  • “Keep me alive as long as you can”
  • “Keep me out of pain as much as you can”
  • “Keeping caring about me”
  • “Keep caring for me”
  • “Stay in touch with me”
  • “Do whatever you can to help me, you know best what it is”

But actually, I think, from my own perspective, I would mean really, although not in the physical presence sense, “Do not leave me alone — stay with me.”

In the end of course, the only thing to do is to ask the patient what they mean, what they are afraid of, and what they want the caregiver to do, or try to do.

And, whatever the patient says, what makes sense is to try to be both realistic, but hopeful, not in the sense of denying reality, but in the sense of trying to find something that can give hope — something to look forward to — even if it is only for the the next minutes, hours, days or weeks, and even if “all it is” is peacefulness and continued human connection.  I hope, when the time comes, that will be enough for me.

I have every peaceful confidence that all those who take care of me, both family and medical staff, will provide it.


The Great Research News About Impact of An Hallucinogen on Cancer Patient Depression and Anxiety Raises a Side Question About Extent of the Problem and the Diagnostic Process

I suspect that the Internet is already abuzz about the study about high impact of careful single intervention use of Psilocybin on cancer patients suffering anxiety and depression (New York Times Report).

Psilocybin has been illegal in the United States for more than 40 years. But Mr. Mihai, who had just finished treatment for Stage 3 Hodgkin’s lymphoma, was participating in a study looking at whether the drug can reduce anxiety and depression in cancer patients. Throughout that eight-hour session, a psychiatrist and a social worker from NYU Langone Medical Center stayed by his side.

Published Thursday, the results from that study, and a similar small, controlled trial, were striking. About 80 percent of cancer patients showed clinically significant reductions in both psychological disorders, a response sustained some seven months after the single dose. Side effects were minimal.

But what surprises me from the article is the statement that:

Cancer-related psychological distress, which afflicts up to 40 percent of patients, can be resistant to conventional therapy. Mr. Mihai’s anxiety began when doctors finally told him he was in remission.

I went and looked at the abstract of the study linked to, and the relevant language is:

Interview-defined depression and anxiety is less common in patients with cancer than previously thought, although some combination of mood disorders occurs in 30-40% of patients in hospital settings without a significant difference between palliative-care and non-palliative-care settings.

The meta study used DSM or ICD criteria.

Frankly, as a long term patient who spends a lot of time in oncology waiting rooms, I find this low number impossible to believe, or rather it makes me deeply skeptical of the diagnostic process and criteria, at least as applied.

DSM criteria are described in general as follows:

Depressive disorders include disruptive mood dysregulation disorder, major depressive disorder (including major depressive episode), persistent depressive disorder (dysthymia), premenstrual dysphoric disorder, substance/medication-induced depressive disorder, depressive disorder due to another medical condition, other specified depressive disorder, and unspecified depressive disorder. Unlike in DSM-IV, this chapter “Depressive Disorders” has been separated from the previous chapter “Bipolar and Related Disorders.” The common feature of all of these disorders is the presence of sad, empty, or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. What differs among them are issues of duration, timing, or presumed etiology. (Bold and underline added.)

So, I suppose the key is “significantly affect the individual’s capacity to function.”  It may be, for example that impact on “function[ing] of depression is almost impossible to tease out for cancer patients whose capacity to function is already so impaired.  (One might, I suppose, see what happens by trying to treat it, but you have to have the diagnosis first).  I know that personally having a psychiatrist expert in serious illness and end of life issues has been life changing, precisely because she can help me work out what is from the cancer, what is from my physical and emotional reaction to my cancer and what is from broader issues.

It could also be that clinicians supervising hard-to-take, and hard-to observe interventions underestimate the effect of those interventions on us, or else they could not keep going day after day.  (By the way, I Learned recently that at Hopkins the people who do bone marrow aspirations are “on” for that task maximum a day a week.  More than that is considered too much stress.  I love the attention to the needs of all.)

For anxiety DSM says:

Anxiety disorders include disorders that share features of excessive fear and anxiety and related behavioral disturbances. Fear is the emotional response to real or perceived imminent threat, whereas anxiety is anticipation of future threat. Obviously, these two states overlap, but they also differ, with fear more often associated with surges of autonomic arousal necessary for fight or flight, thoughts of immediate danger, and escape behaviors, and anxiety more often associated with muscle tension and vigilance in preparation for future danger and cautious or avoidant behaviors. (Bold and underline added.)

I suspect that it all too easy for clinicians, consciously or more likely unconsciously, to decide that the patient is suffering rational fear, rather than “irrational” anxiety.

The bottom line is that the overall circumstances of cancer are likely to make diagnosis according to these criteria difficult if not impossible.  It is just all to easy to get the number down to 30 to 40%, when really we should see anxiety disorders and depression as prevalent in our population.

In any event, I would urge careful thought to how these issues are looked at in patients, and ultimately not restrict proven treatments to those paralyzed by the emotional impact.

In the long term we might be thinking about specialized criteria and diagnostic processes for those with cancer diagnosis, and rather than dealing with issues of labeling consider thinking about whether treatment would be helpful. (Actually this may be happening anyway.  I wonder what percentage of cancer patients are already getting anxiety or depression medication.)

p.s.  Deeply personal note:  As a patient, I certainly suffer various forms of anxiety and depression (personal health status reports here).  As an advocate and blogger, I feel much less of both when I am engaged, writing, talking, and thinking about this.  I also note that the great thing about blogging is that it gets you online and researching (as hopefully shown by the above.)  I would have been talking about the hallucinogen study anyway , but now maybe I actually have something worth saying. I would certainly prescribe advocacy as part of any treatment, had I prescribing authority.