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.

 

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Damage Done By Bad Relationships Between Care Team and Patient — Partnering Lessons

A recent Israeli study of NICU rudeness by parents toward staff, reported in the New York Times, found:

[E]ven [ ] mild unpleasantness was enough to affect doctors’ and nurses’ medical skills. Individual performance and teamwork deteriorated to the point where diagnostic skills, procedural skills and team communication were impaired and medical errors were more likely, compared to control scenarios in which the mother would just say something general about being worried. The team’s ability to perform in critical medical situations with sick babies was affected for the rest of the day, the findings suggest.

and, as with a study focused on unpleasantness from medical staff:

Both studies were done in Israel, but the impact of rudeness does not seem to be culturally bound, a concern that was raised in the initial study design. “Israelis are not deemed to be the most polite people in the world; they say what’s on their mind,” Dr. Bamberger said. “The evidence suggests that even in a somewhat rude society, it still has an effect.”

I doubt that very few of us, when we are even a bit brittle with our caregiving team, realize that we may be impacting not only our own care, but those of others (who may indeed respond with additional rudeness.

It turns out that one approach to minimizing he effect on the care team is to provide training to raise the response threshold, such as by showing and categorizing pictures of angry faces.

To my mind, one of the great benefits of a patient partnering approach is that by humanizing patients and the team to each other, it makes it much less likely that rudeness or insensitivity will escalate.  Rather, the recipients will put the behavior in context, understand the overall situation and history, and respond in a lower key way.

Best of all, maybe folks will learn to use this as learning opportunities, making themselves vulnerable, and ultimately increasing their ability to partner.

It would be nice to think about how to change the intake and patient team process to acknowledge the stresses, and to create a culture in which honesty is requested and appreciated.  I suspect that much rudeness is rooted in powerlessness and fear that any serious attempt to obtain an improvement will be rebuffed.

As the Times article concludes:

But it’s critical for the members of the medical team to be aware of the risk and to acknowledge the problem, Dr. Riskin said, in order to help protect one another and deliver optimal care.

“We are human beings; we are affected by rudeness.”

 

 

Doctors Asking Patients to Help in the Informed Consent Process

Two doctors at the Cleveland Clinic, Dr. Mikkael Sekeres and Dr. Timothy Gilligan, have written an article in the New York Times explicitly asking patients to partner in the improvement of the informed consent process.  As they put it:

We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care.
(bold added)

The article also includes an honest appraisal of how the process can go wrong, and the possible impact.

They offer these specific requests to patients.

■ Ask us to use common words and terms. If your doctor says that you’ll end up with a “simple iliac ileal conduit” or a “urostomy,” feel free to say “I don’t understand those words. Can you explain what that means?”

■ Summarize back what you heard. “So I should split my birth control pills in half and take half myself and give the other half to my boyfriend?” That way, if you’ve misunderstood what we did a poor job of explaining, there will be a chance to straighten it out: “No, that’s not right. You should take the whole pill yourself.”

■ Request written materials, or even pictures or videos. We all learn in different ways and at different paces, and “hard copies” of information that you can take time to absorb at home may be more helpful than the few minutes in our offices.

■ Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.

■ Ask if you can talk to someone who has undergone the surgery, or received the chemotherapy. That person will have a different kind of understanding of what the experience was like than we do.

■ Explore alternative treatment options, along with the advantages and disadvantages of each. “If I saw 10 different experts in my condition, how many would recommend the same treatment you are recommending?”

■ Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to, and be your “accessory brain,” to help process the information we are trying to convey.

These are all excellent best practices.

Now, it would be easy to throw back at the doctors – “Well, you and your institution should be putting most of these in place anyway.  Why put it back on us?

But I think that actually misses the point.  Implicit in the article and in the request is the understanding that medical systems are not monolithic, and that change comes much faster under pressure.  So I understand this as a request to demand partnership in consent, and to implement the practices that can help ensure it.  I also understand this as a request that patients, and particularly groups such as Patient and Family Care Councils affirmatively campaign for the full institutionalization of these approaches.

Ideally progress through such an approach will help lay the groundwork for other patient-partnering innovations.  Indeed, informed consent is such a great area in which to start because the law is clear, and the only question is about the effectiveness of the process.

P.S.  This also underlines the value of research, and of understanding the process of creating a culture of partnering.  It might be interesting to give these suggestions as a handout prior to the consultation, and to measure hospital staff attitudes to informed consent and indeed to patient partnering, before starting doing so, and again after a few months.

 

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.

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.

 

 

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.

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.