Be Prepared for Emergencies As Death Nears

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.  

The bravest are surely those who have the clearest vision of what is before them, glory and danger alike, and yet, notwithstanding, go out to meet it. ~Thucydides

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John had advanced pancreatic cancer. He was 37 years old and married, with a 2-year-old son. He had already endured several rounds of debilitating radiation and targeted chemotherapy, spending long weeks in a hospital far away from his family and friends. But the treatment had helped. His pain had lessened considerably, and he now felt well enough to return home to his wife and child. Nonetheless, his long-term prognosis was very poor.

John and his wife, Patrice, were as prepared for his death as any young couple with a small child could be. They had spoken at length about what John wanted as death approached, which was to be cared for at home with his loved ones and friends by his side. His wishes were written in an Advance Directive for Health Care and a Prehospital DNR form.

Then, one cold weekend in January, John, who had been coughing and running a low-grade fever, told Patrice that he felt as if he couldn’t breathe. Frightened, she called his oncologist, who told her he suspected that John had pneumonia, and directed her to take him to the local Emergency Room. There, John was given oxygen, IV fluids, and antibiotics. Nevertheless, his condition continued to deteriorate. He was barely conscious and struggling to breathe.

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After reviewing John’s blood work and chest X-ray, the ER physician suggested to Patrice that John be transferred to the intensive care unit. His condition was almost certainly a treatable complication of his chemotherapy, he explained. With appropriate supportive care, John could most likely survive this crisis and return home. Since John was now too ill to make the decision himself, Patrice — frantic and terrified — agreed.

John was admitted to the ICU, where he was placed on a ventilator to help him breathe. Nevertheless, his condition continued to worsen. When his oncologist arrived, he was astonished that John had deteriorated so quickly, and ordered an immediate MRI. The scan showed that John’s cancer had spread to his liver, kidneys, and lungs.

After learning the news, Patrice told John’s doctors to disconnect his ventilator, and he was started on a morphine drip. John never regained consciousness. A few hours later, still in the ICU, he died.

John’s case, while tragic, is far from unique. Although the United States has made great strides in implementing alternative care models for people who are facing the end of life, far too many Americans are dying in hospitals who would prefer to die at home. According to the Stanford School of Medicine Department of Palliative Care, studies show that about 80 percent of Americans say that they would prefer to die in their own homes. Yet, 60 percent of us actually die in acute care hospitals and 20 percent die in nursing homes. A mere 20 percent die at home in their own beds.

Why is there such a discrepancy between what dying people want and what actually happens to them at the end of their lives? To a very great extent, the answer lies in a lack of communication between doctors and their patients, and a disconnect between patient and physician goals. Like many terminally ill patients, John thought his Advance Directive and DNR form were sufficient to ensure that he did not receive unwanted, futile medical care as his death approached. Sadly, as is the case with many other people who are approaching the end of life, they did not.

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Terminal illness does not follow a predictable, linear trajectory, as those living with conditions such as cancer and heart disease already know. In many U.S. medical centers, palliative care and life-sustaining therapies often do go hand in hand. Unfortunately, this dualistic approach to end-of-life care has left many physicians confused and uncertain about what the goals of care should be — especially when the clinical picture is not immediately clear.

If you or a loved one has a terminal illness, it is terribly important that you sit down with your doctor on a regular basis and discuss your prognosis, your quality of life, and your goals as they exist today. Don’t wait for your doctor to bring it up — chances are he won’t. Ask questions about what emergencies might arise, and decide in advance what you want to do if they occur. Then make your wishes known to your physician and your loved ones. You can always change your mind. 

No one can plan for all of life’s contingencies — as those who are living with a life-altering illness know all too well. But we can prepare for many of them when we are proactive and informed. Don’t let fear of the unknown hold you back. After all, the unknown is really all there is.  

Keep walking, though there’s no place to get to.
Don’t try to see through the distances.
That’s not for human beings. Move within,
but don’t move the way fear makes you move.”
~ Jalaluddin Rumi