Two days before she died, former first lady Barbara Bush announced through a family spokesman that, in light of her failing health, she would not seek additional medical treatment, opting instead for “comfort care.”
Scouring Twitter after the announcement, I found that most tweets expressed sorrow, largely because Mrs. Bush was electing comfort care and that meant that she would die imminently. Many other tweets lauded her choice of comfort care, noting how brave she was to stop treating her illness.
Both of these sentiments reflect the language problem that doctors and patients have at the end of life. When physicians such as me divide care into “medical treatment” and “comfort care,” we ignore that we should focus on both comfort and medical treatment at the same time.
Medicare policy reinforces the divide between medical care and comfort care. For example, patients must forgo curative treatment (such as chemotherapy) if they choose to enroll in hospice. As an oncologist, I see on a daily basis how this language problem makes it harder for doctors to do what’s best for our patients.
I recently took care of an older woman in the hospital with advanced multiple myeloma – a bone marrow cancer. She was at her limit: After several chemotherapies and stem-cell transplants, she could barely get out of bed to get a drink of water due to fatigue. To top it off, she had significant pain from where her cancer had literally eaten away areas of her bones.
I sat down next to her hospital bed.
“I’m just so tired,” she said. She wanted to leave the hospital and go home.
I wanted to tell her that I did not think more chemotherapy was a good idea because it would only weaken her further. The only way I could guarantee that she would make it home was if she were enrolled in hospice, as this program could provide the care she needed at home.
I took a deep breath and said, “I think we need to focus on making you comfortable.”
She immediately looked angry. “After all the chemo I’ve been through, you’re giving up on me now?” she said.
Like most Americans, she understood comfort care (also called palliative care) as being on death’s doorstep. Most doctors and patients equate comfort care to hospice and end-of-life care. That explains why comfort care is often provided only days before a patient dies.
But I have a very different perception of comfort care. We can focus on symptoms while treating medical illness. This has been the core effort of some of the luminaries of palliative care – to change our public perception of comfort care. According to Diane Meier, director of the Center to Advance Palliative Care and a MacArthur Grant recipient, comfort care is “appropriate from the point of diagnosis of a serious illness, whether you’re going to live with that illness for 10 years or 10 days.” More than 60 percent of Americans respond positively to this concept of comfort care.
My patient with multiple myeloma chose to go home on hospice once she understood that her disease was incurable. We were all set to discharge her, when she frantically called me back into the room.
“Why are these nurses telling me I won’t get any blood transfusions when I’m on hospice?” she asked. She had required these transfusions for years, because the myeloma impaired her bone marrow’s ability to produce the red blood cells that carried oxygen in her blood.
I tried to explain that hospice wouldn’t cover her blood transfusions because hospice was meant to focus on comfort, not on prolonging life.
She seemed perplexed. “But blood transfusions make me comfortable,” she said.
She was right. Without blood transfusions – technically considered a “life-prolonging” therapy – she would feel extremely fatigued, and possibly die earlier. Despite the fact that hospice care could dramatically improve her pain and would allow her to go home, she ultimately decided not to enroll in hospice because she was not willing to forgo blood transfusions. We discharged her instead to a nursing home, where she could continue receiving transfusions, and where we knew she would be well cared for.
Stories such as this illustrate how bad policy perpetuates the unnecessary division between medical and comfort care. Patients with life-threatening illnesses shouldn’t have to choose between blood transfusions and adequate pain control at home.
For all of the criticism aimed at the Veterans Health Administration, it has understood that medical care and comfort care can co-exist. In 2009, the VA began allowing patients to be enrolled in hospice while still receiving life-prolonging treatment, such as chemotherapy. Because of this policy, when I see patients at the VA, I discuss end-of-life care very differently than with other patients.
I recently met a Vietnam War veteran with stage IV lung cancer in my clinic. He was just beginning chemotherapy for cancer that had spread to several lymph nodes in his abdomen. One lymph node, in particular, was causing him considerable lower abdominal pain. I recommended that he enroll in hospice for better pain control and nursing care at home.
“Does that mean I can’t get chemo?” he asked.
“No,” I replied. He gladly enrolled in hospice.
My clinic at the VA has shown me that it’s a lot easier to focus on providing comfort care when we don’t ask patients to choose between comfort and standard treatment.
I don’t know the specifics of Barbara Bush’s final months. I hope she spent most of it with family, doing what she loved. But if she had the experience that most of my patients have, she likely missed an opportunity to be comfortable well before she chose comfort care.
The point of medical treatment is to make patients comfortable, both mentally and physically. Thus, comfort care shouldn’t be a choice for patients; it should be the default, whether someone is in the middle of chemo or on his deathbed. If providers, patients, and policymakers use the right language when treating a life-threatening illness, patients can stop worrying about the choice between treatment and comfort. Perhaps then they might actually start feeling comfortable.
Ravi Parikh, M.D., is a fellow in hematology and oncology at the University of Pennsylvania and senior clinical advisor at the Coalition to Transform Advanced Care. Follow him on Twitter @ravi_b_parikh