Wrap Around Care and Right to Choose

A lovely NYT article by Jessica Nutik Zitter, headed Should I Help My Patients Die? gives a whole new, to me at least, perspective on the relationship between comprehensive care and end of life choice.  As a palliative care doctor in  state that allows, with multiple protections, assistance in the end of life process, she tells of this referral:

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, the patient agrees to try an anti-depressant, and dies three moths later in a nursing home.

But the real reasons for the patient’s despair are not medical, not pain, but psychosocial and emotional, with strong legal and financial elements.  These were needs that the system, notwithstanding our growing understanding of the need for multi-faceted comprehensive care, is just not yet able to provide.

This leads me to want to put the question much more starkly:

Do we have the right to force people so stay alive when we are unable to give them what thy need to have hope and meaning in their lives?

In terms of our understanding what the above described patient needs, take a look at this graphic from the recent NQF document, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care

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

I encourage a look at the full paper linked above. (This link is to my summary)  Disclosure: I provided input).

When you look at all these areas, and the much more detailed descriptions in the full paper, I would suggest you realize how far we are from meeting the needs, and therefore how inappropriate it is to force people to stay alive and suffer needlessly.  At least in the enlightened states we understand this with respect to being pain free.  How about for the other needs?

P.S.  The importance of this issue is highlighted from this study from Canada, as reported in the Washington Post, finding that the majority of those who wanted to end their lives medically were driven by psychological suffering, rather than physical suffering.

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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.

 

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.

 

 

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.