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.
Hospice Austin Executive Director
Thank you, Marjorie, for this important message. I watched the PBS program based on Dr. Gawande’s book and was greatly impressed. As one who has had the training at Hospice Austin in the “On Our Own Terms” sessions and from my work as a volunteer at Christopher House, I have come to value not only the wonderful work Hospice does but also the possibilities of more and better palliative care for many.
If you organize a program based on this topic, please let me know. My husband Ed and I are both interested. And let me know if I can help in any way.
Thank you, Eileen, we will definitely keep you posted!
Outstanding peace Marjorie we need more people talking about the end of life and not be afraid to talk to family.
Thank you! We’ve posted information on our website and printed a packet called, “What’s Your Plan” to help facilitate conversations among families. https://www.hospiceaustin.org/news-information/advancedirectives/
Very helpful article. I did not realize that people who offer Palliative Care services were poorly paid!
Yes, that’s why palliative care clinics outside of hospital settings are so rare. Hopefully that will change. It seems like Medicare is starting to realize the value that palliative care is bringing to patients with a serious illness.
I have read the book “Being Mortal” and recommend that everyone read this important book. There is a message there for all of us. I think that your post is wonderful and appropriate for all of us to read and think about. All of us reach this time in our lives when loved ones are dying and also when we are approaching our own demise. We need to give it our full attention when we are able and have our loved ones near us.
I agree, Sandra. Thanks for your comment!
I’m so grateful that during my mother’s hospitalization for CHF in February, her cardiologist, Dr. Caitlin Giesler, advised that it was time to think about hospice. It was an idea that my sister and I were receptive to, once we realized that Mom had begun a steep decline into heart failure. (My father died at Christopher House in December 2000.) A difficult but loving family discussion ensued and Mom agreed, without much resistance, because she wanted to die at home surrounded by loved ones, not in a hospital setting.
We brought her home February 14, 2015, under hospice care. She passed away April 1. We’ve asked for memorial contributions to be made to Hospice Austin. I honestly cannot imagine how we would ever have been able to manage without the tremendous support we received. Thank you, from the bottom of my heart, for what you do.
Connie, we’re so sorry for your loss. Thank you for allowing us to care for both of your parents. We’re glad that we were able to play a part in honoring your mother’s wishes. We’re still here for you and your family – please call us if we can help in any way, and know that we are thinking of you!
Hospice care is one of the best choices I could have made when my grandpa moved in with us! He was in our house for a few months and the hospice workers were very professional and very nice in this difficult time! I would love to give back one day and volunteer! Are there going to be any volunteer training days in the future?
Yes, we have a volunteer training from Sept. 15 – 26. You can learn more here: https://www.hospiceaustin.org/get-involved-2/volunteer/
Would love to have you volunteer with us!