Politico Article on “Crisis” Facing Hospice Highlights Growth of Inpatient Hospice Deaths

A recent article in Politico under the provocative title Hospice in Crisis makes the case that changes in family structure, improved life expectancy, technology and expectations are creating problems for the hospice movement because the rigidity of the reimbursement system does not allow for flexible responses.  In particular, the article points to the increased recognition of the need for in-patient hospice care:

Some experts see promise in using more inpatient care, whether in a freestanding “hospice house”—a more formal and regulated setting for care—or a section of hospital or nursing home. Hospice houses are more common than they were 20 years ago, but they are still not the norm. By 2015, the proportion of deaths in America that took place under inpatient hospice care rose to 8 percent, from zero in 1999, according to research recently published in Health Affairs. With soup on the stove, cookie dough in the fridge, and places for those who do have family and friends to gather, such houses don’t feel institutional. Mostly they’re used for a brief stay to control a crisis, or for a few days of respite care for family caregivers. But some who have studied hospice extensively, like Elizabeth Bradley, a health policy expert who recently became president of Vassar College, say it’s worth thinking about how this inpatient setting can take on a bigger role, at least toward the end. “It makes a lot of sense,” she said. “It’s not home—but it’s homelike. And it’s set up to pass you through the end of life.”

For those unfamiliar with the minutiae of the payment structure, while the Medicare system does allow for higher payments for inpatient hospice, availability is strictly controlled, with a percentage of days cap, and situation eligibility requirements.

Personally, having seen the physical strain that the end-of-life process puts on family caregiving networks (if they even exist), I believe that in patient hospice should be much more readily available.

Nor do I accept the argument that because almost everyone says they want to die at home, this is the end of the matter.  I believe that many say this because they feel that being at home means that they will be back in control.  But that is as much a comment on the lack of control that patients feel and fear in hospital than the desire for home as a specific place.

Once we design inpatient hospice that gives control to the patient, I suspect that many more will choose that option.

 

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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.

 

 

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.