Twenty-nine-year-old Brittany Maynard ended her life on November 1, 2014 with a lethal dosage of prescribed drugs. Her incurable illness was a tragedy. Her candor and willingness to share her final days with the public were acts of courage which illustrate the need to talk about a topic that most of us would rather avoid. It is time for a national conversation about the way we die.

Boston surgeon Atul Gawande’s recent book, Being Mortal: Medicine and What Matters in the End, discusses our medical system’s poor handling of aging, serious illnesses, hospice and palliative care.

He begins with a story: “Don’t you give up on me,” demanded a man with cancer, though the surgery he wanted couldn’t possibly cure him. “He was pursuing little more than a fantasy at the risk of a prolonged and terrible death — which was precisely what he got,” Dr. Gawande writes.

Dr. Gawande and the other physicians caring for this man couldn’t bring themselves to discuss the larger truth about his condition or the ultimate limits of their medical capabilities. Dr. Gawande writes, “If he was pursuing a delusion, so were we.”

My own father died in 2011 from emphysema. He had defeated death many times and didn’t want to discuss the topic – so we didn’t. During his final day in the hospital in Cleveland, he began to decline rapidly. A nurse called my sister to find out what we
wanted to do. During that call, my father’s heart stopped and my sister told the nurse that we should let my father go. The nurse began to shout down the hall, “Do not resuscitate, do not resuscitate!” It was a traumatic moment that could have been prevented. The doctors were apparently waiting for us to bring up hospice care, and we were waiting for the doctors. Because no one did so, we were woefully unprepared for his death, with no family present.

The Institute of Medicine recently released a groundbreaking report that identified problems in this country’s end-of life-care, including reluctance among healthcare professionals to have honest conversations about end-of-life issues, a shortage of doctors trained in palliative care, and “perverse financial incentives” which encourage procedures that many terminally ill patients may not want. The report’s nonpartisan authors recommended more palliative care training and adequate reimbursement for continuing conversations with patients on advance care planning.

Many people think that palliative care and hospice care are synonymous. While both focus on alleviating pain and discomfort, palliative care can be offered to anyone with a serious illness who is still receiving curative treatment.

We need better palliative care in this country and we need more palliative care physicians. As with oncology or cardiology, physicians can specialize in palliative care and receive board certification. The problem is that the U.S. medical reimbursement system is largely based on fee for service – either seeing many patients in a day or performing procedures. Palliative care specialists spend significant time with each patient, clarifying the patient’s and family’s goals of care and addressing symptoms.

These specialists will continue to be relatively rare until they can be adequately reimbursed. As it stands today, most palliative care programs must be subsidized by the hospital or hospice sponsoring them, limiting their growth and availability.

Hospice Austin is proud to sponsor Austin Palliative Care and make its services available to the general public. Staffed with physicians and nurse practitioners who are board certified in hospice and palliative care, Austin Palliative Care opened an outpatient clinic last month and has begun seeing seriously ill patients on referral from their physicians, including patients seeking curative treatment.

Brittany Maynard showed us the importance of talking with our loved ones about our wishes. But most of us avoid this topic as too depressing or premature or simply unnecessary. By avoiding these critical conversations, however, we unwittingly hand some of the most precious days of our lives to strangers who will do their best to give us the miracle we are seeking, but at the cost of isolation in an ICU unit, with little time or privacy to address the emotional and spiritual issues that often arise at the end of our lives. Contrast that scenario with a hospice patient living at home and surrounded by family members who have the chance to express how much their loved one means to them.

Reflecting back on my family’s experience, I wish now that we had asked for a palliative care or hospice consultation. We might have understood how imminent my father’s death was and been at his bedside, rather than mistakenly believing that he was slowly recovering.

Most of us want what Brittany Maynard wanted – to retain control, to preserve our quality of life, and ultimately, to die peacefully, surrounded by those we love. Palliative care and hospice care can help us achieve those goals – but only if doctors, patients and families have honest conversations first.

Marjorie Mulanax
Hospice Austin Executive Director