When socializing with fellow young physicians, most of whom are not in palliative medicine, I am reminded that I have the unique opportunity to share time and attention with my patients. We reflect on “the old days” of medicine, where physicians had long standing relationships with their patients which allowed them to more easily direct medical decision making which was appropriate for the individual patient. I often tell others I chose this field because it is the closest thing to that particular kind of medicine, where we can still “do the right thing” for patients, most of the time. That although many parts of hospice are very rigid (i.e. 6 month prognosis, palliative goals only) we still have significant freedom to adjust the plan of care to meet the needs of our individual patients.
My friends envy the extended visits I have with patients where I learn about their family and friends and, by doing so, also learn about their goals and fears. The time I am permitted to invest in my patients allows me to find out who the person is and then work to match the medicine to their needs. My colleagues often talk about the opposite – how their job is to make the people fit the medicine. We’ve marveled over this golden part of medicine where, at least as they die, hospice provides patients what they really need to live well.
Most of us practicing in this field recognize this could not continue indefinitely. With increasing complexity of hospice patients, an aging population and less options for debilitated patients with poor social supports, it was inevitable that the growing cost of hospice would catch someone’s eye and become a target for cutbacks. We’ve seen necessary layoffs and closings of hospices across the country.
Last month, this became a personal reality when the hospice I work for was shaken by a downsizing where we lost 19 valued colleagues. We consolidated our two hospice units into one with a loss of four beds. This was made necessary by the increased scrutiny and decreased payments we have received for the care we provide. We now pick apart each component of the general inpatient (GIP) stay to be sure patients meet criteria.
We second-guess enrollment of patients whose prognoses are in question even when their symptom burden clearly demands hospice support. Our ability “to do the right thing, because it is the right thing to do” has gotten more limited as we rely more heavily on benevolence funds to provide care for patients for whom insurance does not cover the bill. Increasingly, the feeling that I, too, force my patients to fit into the mold of medicine is creeping up on me.
On the day our agency announced the consolidation, I was caring for a young woman in our inpatient center. During her stay she had been very verbal about her appreciation for the way the hospice team cared for her and worked together to provide comprehensive care. She felt a level of respect and humanity she had not felt anywhere else in her long experience with medicine both personally and professionally. When she read about the changes in the news paper the next day and sensed the grief we were all feeling she was appalled hospice would cut back like other areas of medicine. She made it a point to tell us, “No matter whether you get lumped in with the rest of medicine, you are still special. What you do here is still special. That needs to be recognized.”
I’ve chosen to believe her. Because if I didn’t, it would be hard to continue to do what we do, knowing we now have one hand tied behind our backs. What we do is special. The people in this field are special. As financial resources continue to change, the field will be forced to change as well. What will not change is that there will always be caring nurses, physicians, counselors, and friends who recognize the value of meeting patients where they are and maximizing their lives as they live with serious illness.
Seemingly, hospice and palliative medicine is unique in the way we still place value on time and attention to the person. We cannot lose this focus. The way we deliver the care may change. The setting in which we deliver the care may change. I am hopeful the commitment to care will not.
So where do we go with all of our compassion and commitment? I’m grateful to inspired leaders who lead us in the right direction where we can apply these skills. Grateful for the thoughts of leaders in the field like David Casarett, MD, MA who proposes an alternate method of delivering palliative care at home which does not force patients to give up curative treatments or have a prognosis of 6 months in order to get the care they need.
And the work of CAPC and Diane Meier, MD who argue for expansion of palliative medicine instead of the limitation of it.
And organizations like NHPCO’s Hospice Action Network who advocate for policies to ensure the best care for patients and families facing the end of life. Their recent activity at Capitol Hill aims to help maintain the quality care we deliver.
Because the care we deliver is still special. And the needs of our patients don’t always fit into a mold. Let’s not forget that.
Kristina Newport is a palliative care physician who blogs at Pallimed.