How one patient’s end-of-life care can affect us all


David was 42 when he died from stomach cancer. He spent the last year of his life receiving useless chemotherapy and debilitating radiation. David was in terrible pain all of the time. He stayed in bed for months as cancer destroyed his ribs, back and lungs.

Finally, David was rushed to a hospital, plugged into a breathing machine and pierced by countless IV drips. He died despite a battery 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 pills to take her life.

At the time of David’s death, his son was 17. The teen found comfort in the kind of pharmaceutical intervention that comes from the bottle and needle. He was high school dropout and in jail by 20. Although paroled at 23, David’s son was back in prison by 26. His life had dissolved to rubble.

David’s suffering, poorly controlled during that last year of life, was a direct result of a 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 us that our fear of death drives the pathology of all societies, and that 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 those around them, then spread like cancer. Their pain is in all of us, augmented by the screams of the thousands of patients who die in similar agony.

Our failure to have open, meaningful and realistic conversations around our personal mortality results in the suffering not only of each patient 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. We do not talk about or plan for death because we deny our mortality.

Here 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, starts with a simple goal of what can be done to help one patient and one family.

The core purpose of the American Academy 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, 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 (AMA), Centers for Medicare & Medicaid Services (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 that improves clinical outcomes and quality of life make solid business sense. These goals are noble and important. What is missed is focusing on improving the care around dying. True holistic, open and 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 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 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 after the 1983 Tax Equity and Fiscal Responsibility Act, which had Medical hospice benefit — has gradually transformed health care. 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. It was a remarkable moment, since most cancer patients died during the 50 years that ASCO has existed. This signals a new openness to conversation around dying, even among those that treat the dreaded disease.

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

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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