Palliative Care Is Not Giving Up

While I thought that I was learning how to live, I have been learning how to die ~Leonardo da Vinci

Recently, I read an op-ed in the Washington Post written by Dr. Isaac Chan, a medical oncology fellow at the Sidney Kimmel Comprehensive Cancer Center at John Hopkins Hospital in Baltimore, Maryland. The title was “ My Patients Are Dying. I Won’t Give Up on Them.” At first I thought the piece would be what the title implied — testimony to the many ways that appropriate end-of-life care can enhance the quality of a dying person’s life and make dying a less frightening event.

Sadly, that was not what the article was about at all. In fact, it was actually a treatise (albeit probably not intended as such) on the ways in which well-meaning physicians fail their seriously ill patients by conflating holistic, person-centered care with “giving up.”

Dr. Chan describes two patients, one of whom is a 68-year-old man whose kidney cancer has been treated with five different kinds of chemotherapy, each one of which has failed. His cancer is spreading. He is suffering horribly from the unrelenting side effects of chemotherapy, yet he believes that more aggressive treatment will buy him more time. Dr. Chan knows it won’t. In fact, he knows that more chemo may actually shorten the man’s life and will certainly diminish his ability to enjoy what time he has left. But he prescribes the medicine anyway because that’s what the patient wants.

The dying man subsequently suffered an intracranial hemorrhage (bleeding in the brain) which may have been related to low blood counts due to chemotherapy. He died tethered to machines in the ICU.

The second patient is a 34-year-old woman with advanced gallbladder cancer that has spread throughout her body. She has been seriously ill since her initial diagnosis, and Dr. Chan has been talking to her and her husband about the benefits of palliative care. But, Dr. Chan says, they don’t even hear him…they only hear the “loud drumbeat of what the next chemotherapy will be.” And so he gives them what they want, despite the suffering he knows it will cause.

Futile Care & Wasted Time

Providing futile care is not good medicine. If I went to my doctor with a cold and demanded antibiotics because I believed they would make me better, my doctor would have a professional obligation to refuse my request. Antibiotics don’t treat viral infections, and overprescribing them has led to the emergence of antibiotic resistant bacteria — so-called superbugs — that kill with incredible efficiency. And while there is certainly more desperation to a request for “just one more round of chemo” from a person dying of cancer, the same principle applies. Doctors aren’t supposed to prescribe medicine when they they know it won’t work and will almost certainly do more harm than good.

And yet, when it comes to cancer therapy, they do it all the time. And the reason, I believe, is because telling a patient they are going to die no matter what you do for them is terribly, terribly hard. It’s hard the first time. It’s hard the 100th time. It’s hard the 10,000th time. It hurts like hell to look into a person’s eyes and see the pain and confusion and fear that accompany the knowledge that death is a certainty — not someday, but soon.

But if you are a decent doctor — and a decent human being — that is what you do. Because everyone dies, and despite all your years of training and all of your hard work, you can’t change that fact. But you can — if you’re not scared to talk about it — help your patients prepare for it in the best way they can. You can help them understand that death is not the enemy — it’s the way every life ends. You can support them as they grieve for the dreams they will never realize and the sunsets they will never see and the children they will never have. You can meet them where they are (as Dr. Chan says he must) and guide them gently to a place where the drumbeats of the next chemo are not quite so loud and there is room to think about a different kind of care. 

But you can’t do it alone — no one can. That’s why palliative care teams exist, and why involving them in your patient’s care at the time of diagnosis is critical to helping them live the best life possible until the very end. Patients need the help of trained palliative care professionals — doctors, nurses, social workers, psychologists, chaplains — to navigate the challenges of serious illness, whether they are still pursuing curative treatment or not. 

In a wonderful commentary in the San Diego Union Tribune, Jennifer Moore Ballentine, the executive director of the CSU Institute for Palliative Care, provides an excellent definition of palliative care. She writes:

“…Palliative care is person-centered care designed to anticipate, prevent and manage suffering for patients with serious illness, from the time of diagnosis onward, alongside curative treatment or without it. Hospice is a type of palliative care available to people with a life expectancy of six months or less, who are no longer seeking treatment.”

Nowhere in that definition is there a hint of “giving up.” If young doctors like Isaac Chan understood that, their patients would have a better chance of living the rest of their lives with less suffering and more joy. 

About Kathleen

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. After relocating to California, she 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 knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.