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.

 

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.

 

More Ideas on Research Driven By The Patient Experience

A few days ago I blogged about my patient perspectives on a patient-partnered research agenda.

Since then I have had some more thoughts of examples of specific research questions and areas that might come out of the day to day experiences I have had with treatment and symptoms.  This is one of three areas suggested in the prior blog.  (Note: I am not a research scientist, so it may be that lots of what I ask for is already going on.  If so, hurray, and the question becomes how to share that with patients and their day to day providers.)

Exhaustion

I have often shared that even through exhaustion is recognized as the worst symptom of my cancer, it was my shrink who came up with an approach of using Ritalin.  I would probably not be writing this without the energy that gives me.

So, I wonder if there is any systematic research on alleviating exhaustion, the same way there now is about dealing with pain.  A 2002 paper concluded:  It is hard to draw conclusions with regard to the relationships between fatigue and disease- and treatment-related characteristics, because these relationships are seldom properly investigated. Relationships between fatigue and psychological, social, behavioural and physical factors have been established in several studies. However, most studies focused on the depression-fatigue association. Finally, most intervention studies to reduce fatigue appear to be successful, but the follow-up analyses are lacking.” 

There is certainly research about exhaustion, but none that seems to have impacted treatment, at least that I know of.  I would love to see some proper random studies of different exhaustion treatment approaches.  My own experience has been that the exhaustion is hard to predict and understand.  Sometimes food plus Ritalin wakes me up — sometimes I am still exhausted.  Anyway, research would surely help.

Communication Capacity

At the risk of betraying my own ignorance, I have observed what seems to be a relative lack of focus on how to maintain communication capacity.  There is certainly plenty of research going on deafness and on, and neurologists think about the ability to talk and type.  But I note that I know of only one person in our retirement community who look her own life, and that, she explained in a letter distributed after her death, was because the progressive neurological disease from which she suffered would inevitability cut her off from communication.  So research on the general topic of communication capacity optimization would be really important to many of us.

Treatment and Procedure Pain

Again, while it is obvious that providers take pain minimization very seriously, I think there needs to be far more attention on how to do this at the procedure specific level.  I have had two prostate biopsies, and about four bone marrow aspirations.  Reputations notwithstanding, the prostate procedure was far worse.  I suspect that is because its a male world, and we feel unable to make a fuss.

About one bone marrow procedure, not conducted at my normal hospital, the less said the better.  They were using a mechanical device to go into the bone, and it sounded like a Black and Decker drill.  As my grandson later pointed out, I should have said, “No thanks I already have one.”

Seriously, the pain level  of that procedure varies enormously.  I assume there are lots of factors, of which technician skill is probably the most important.  Interestingly, at Hopkins, they have a policy that no-one is on for more than a day a week doing that procedure, because of how stressful it is to do it.  That’s a considerate approach all around.

More generally, however, data on how patients experience all these procedures, what causes variation, what palliation or technique changes might help, would all be useful.  (It has, for example, struck me that the pain is worst at the beginning of the bone procedure, when the pressure seal is broken.  I have wondered if the pain is associated with a difference in pressure inside and outside the bone, and if there might be ways of minimizing that.

Even blood draws.  How many technicians ask the patient which locations are the least painful?  Or how a particular draw went?  I have one nurse whose draws are painless.  I asked her why.  She said that she is diabetic and had had to give herself an injection every day throughout her pregnancy.  She should be training everyone, and she should be asked to create the generalizations for pain-free blood draws.  She seems to know them, bless her.

It could be interesting to think about what kind of process would get the best possible lists of these kinds of areas, and then figure out how to bring existing knowledge and expertise into the picture.