Hospice: Preventing pain after death

Posted by on Sep 30, 2016 in End of Life | 6 comments

Hospice: Preventing pain after death

David was 42 when he died from stomach cancer.  He spent the last year of life receiving useless chemotherapy and debilitating radiation.  More important, David was in terrible pain, all the time.  He lay in bed for agonized months, as the cancer destroyed his ribs, back and lungs.  Finally, David was rushed to a hospital, plugged into a breathing machine and invaded by countless IVs.  Agitated, in pain, he died despite a futile storm of tests, drugs and several rounds of rib-cracking CPR.

His wife, previously positive, happy and successful, never recovered. She quit work, drank heavily, and spun into a therapy-resistant depression.  12 months later, she used those same pills to take her life.

At the time of David’s death, his son was 17. The teenager found comfort in the kind of pharmaceutical intervention that come from bottle and needle.  A high school dropout, he was in jail by 20, and although paroled at 23, found the streets too much.  Back in prison by 26, his life dissolved to rubble.

David’s suffering, poorly controlled during that precious last year of life, and the tragedy of his last days, were a direct result of the failure to plan for the inevitable and the inexcusable negligence of his caregivers to provide comfort. That misery transferred to those he loved.  David’s pain continued after death.

Ernest Becker taught that our malignant fear of death drives the pathology of all societies, and thereby man may be a diseased and doomed species.  In that light, David’s end-of-life journey amplified our universal injury.  The anger, fear, loss and confusion of David’s family sickened them, and the hundreds of other people they touched, spreading like cancer throughout humanity. Their pain is in all of us, augmented by the screams of the thousands of patients who die in similar agony, everyday.

Our failure to have open, meaningful and realistic conversations around our personal mortality, results in suffering not only of each patient and family, but of civilization itself.  While mega-atrocities dominate the front page of every paper and website, underlying that chaos is the banal pain of our lives

Of course, this is a cycle.  We do not talk about or plan for death, because we deny our mortality, and in doing so we make the pain of dying worse, which than ripples across society, to fan our subconscious horror.

Perhaps, therein lies an opportunity; a way to begin a universal conversation about dying.  Instead of an abstract struggle to recognize man’s psychoanalytic flaw, his status as a demi-god with which he cannot cope, start with a simple goal; what can be done to help one patient and one family.

The “core purpose” of the American Association of Hospice and Palliative Medicine (AAHPM) is to improve the care of patients with life-threatening or serious conditions through the advancement of hospice and palliative care.  Given what we know about inadequate pain control at the end-of-life, ubiquitous futile treatment for incurable illness, and poor final planning by millions of patients with terminal disease, this is a vital mission.

The AAHPM, the American Medical Association, CMS and countless other health leadership bodies, have seized on quality end-of-life care as a mandate to prevent individual suffering, a basic support to families and foundational to the distribution of scarce resources.  Palliative medicine improves clinical outcomes, quality of life and from a purely financial sense, makes solid business sense. These goals are noble and important.  What is missed in that focus on improving the care around dying is the most critical mission.  True holistic, open, honest conversations about the end-of-life, can save the world.

Seen this way, hospice care is a stealth grass-roots campaign to save the species; better end-of-life conversations may improve our understanding of the dominance of mortal fear in the decisions we make. This is kind-of-like recycling your newspaper, learning to drive 55 MPH or using low wattage bulbs. These do not individually make a difference, but they lay a foundation on which to build an entire system of environmental health and therefore address global warming.  A caveat applies to both the environment and death; one hopes we are not too late.

The growth of hospice, which reached America in the 1960s, but expanded logarithmically after the 1983 Medicare Hospice act, has gradually transformed healthcare. Nurses and doctors are trained to emphasize end-of-life discussions.  Hospice and Palliative Medicine has expanded as a formal specialty.  Even the choice of assisted suicide, has become a public conversation. In 1950, 85% of patients in America died in hospitals and nursing homes. By 2015, 45% of terminal patients received hospice care, most at home.

Two years ago, the American Society of Clinical Oncology (ASCO), in collaboration with AAHPM, held their first convention devoted solely to end-of-life care; a remarkable moment, given that most cancer patients during the 50 years that ASCO has existed, died.  This signals a new openness to conversation around dying, even among those that treat the dread disease.

By reducing the number of horrible experiences, like that of David, palliative medicine may decrease the ambient circulating pain in society. Even more critical, if we can accept that we are mortal, then perhaps we can begin to face that how we cope with death is the basis for all the decisions we will ever make, the foundation of our lives.  By empowering this vital introspection, we may achieve something greater.  A future for all of us.

6 Comments

  1. Marvellous reflection on the unforetold consequences spawned by lack of end-of-life planning… Thanks!

  2. A tale too often told! The knowledge of how to treat pain has expanded tremendously. The understanding of what is end of life??
    Still much to do a half century since Cecily Saunders…
    Thanks!

  3. Beautifully and thoughtfully written. I have a chapter on end-of-life decisions in a book I’ve written on caring for the body. If the book finds a publisher, I may ask you for a blurb!

  4. I won’t argue Becker with you because his works are philosophical, open to personal interpretation and we both already know that we are at opposite ends of the spectrum with relation to his works. I will say that I do not believe there is universal death denial. Humans have always talked about death and all know they will one day die…it’s fact. The conversations stopped when it became unfashionable to discuss it and unfashionable to take care of your own family members in your own or their own homes. I do not believe that humans fear death but rather fear the unknown of what happens after death. Lastly, death denial and this unfashionable nature of it seem to escalate with affluence not poverty.

    Now, let’s talk about your David story. Millions of people die every day and not every spouse or child end up like those in your story. In fact, hardly any do…it’s rare that death is the cause as there is usually another or underlying condition/reason(s) already there and oftentimes already underway. If you disagree can you provide statistics?

    If, hospitals and physicians are so horrible at treating pain and pushing “futile” care why aren’t we changing the system and, perhaps, arresting the doctors for torture and crimes against humanity?

    Now you say that…

    The “core purpose” of the American Association of Hospice and Palliative Medicine (AAHPM) is to improve the care of patients with life-threatening or serious conditions through the advancement of hospice and palliative care.

    It would be nice if they said “quality” hospice and palliative care but they don’t state this nor do they state what you said. I’ve spoken with them and offered them my story so they could learn from it and make sure it doesn’t happen again. Do you know how they responded? They claimed that they are simply a membership organization, only do things for the benefit and advancement of their members and have no authority over anyone else (hospices or otherwise) to do anything about such occurrences. Well, so much for improving “the care of patients” wouldn’t you say?

    Seen this way, and considering the discussions of legislating it (hospice) as mandatory when traditional care is deemed futile and cost savings are to be had, hospice care could be considered a stealth function of reducing our global population as the UN is wanting to do as the most effective way to combat climate change. Less people, less greenhouse gases. And, incidentally, It’s increase in the early ’80’s was nothing more than a cost cutting measure for Medicare but you knew that.

    Now, your 45% hospice usage statistic. Every year the NHPCO produces an annual Facts and Figures report on hospice use in America. Up until 2013, they included a “calculation” (a percentage) of total deaths in hospice vs. total U.S. deaths. These numbers they claimed were estimates of estimates and were based upon “the known to be” faulty statistical reporting done by nationwide hospices. The CDC total annual deaths they claimed was from the CDC but didn’t always match up to what the CDC showed. In the 2012 report, they claimed that for 2011 they “estimated that approximately” (an estimate of an estimate) 44.6% of all U.S. deaths occurred in hospice. Well, their math was wrong that year and their numbers actually calculated to 42.1%. Significant if you want to show an ever increasing usage. You can check it out if you like…it is on page 4 of the 2012 report. Just do the math as they instruct.

    So I called the NHPCO and told them their number was wrong. Do you know what they told me? They said they didn’t have a calculator (though admitted to sitting in front of a computer…they all have calculators) and would revise the document if they could confirm the error. They also claimed that the CDC total was not from the CDC’s final document. So I contacted the CDC and asked them when they would have a final document. They gave me a date and asked if I’d like to be emailed when it was out. I said “sure.” When I got the final, I recontacted the NHPCO. They were not happy and said they were not going to change the report. Starting in 2013, the NHPCO said (on that same page 4 section) they didn’t have final CDC numbers so they couldn’t do a percentage calculation now but they would revise the report when the numbers came available. When they came available, I contacted NHPCO and asked what they would be revising the report to since the 2012 percentage for 2011 data was overstated. They said they weren’t going to change any reports but they actually did. They TOOK OUT the sentence that stated they would revise the report when the CDC numbers were available.

    Ultimately, the 45% number is an estimate of estimate of an approximation and cannot be considered reliable. The NHPCO is never going to change it because they would have to show declining enrollment at least to correct the 2012 report for 2011’s data and 45% in most people’s minds is “almost half’ whereas 42.1% doesn’t get the same “round up” response nor sound as good. So long story short, you’re passing on faulty data.

    So how will palliative care reduce the number of horrible experiences like David’s? Will hospitals now strip patients of their choice of what happens to their body and refuse patients the chance, no matter how minuscule, to attempt a curative measure? Will they force patients into hospice whether they want it or not? What will it be?

  5. To expert Reed, if you disagree with the experimental design and the outcomes, do your own analysis. Also, reading Reed’s connection with environmentalism and hospice care was painful; the direction, misguided. I am not a physician, and my experience of the medical profession is limited, but I do know what suffering looks and feels like. If a physician is thinking about how the survival of their patients negatively affects the environment, that physician should consider actuarial science as an alternative profession. End of life care is vital, helping patients and families understand death rather than merely talking about it does have a positive impact (speaking from personal experience, the sooner the better). We all suffer, we will all eventually die. With creativity humans can alleviate suffering, and all creative processes begin by asking the appropriate questions.

  6. Back in 2000, my grandfather, diagnosed with ALZ, had fallen and broke a bone. He was otherwise healthy and on no medications. Hospitalized and put on morphine, the decision was made to withdraw food and water and “let him go.” Of course, a family member played a huge role in this decision but it seems to me that the outcome was “semi-winkable.”

Leave a Reply to M Yoong Cancel reply