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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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.

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.

 

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.

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.

 

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.