Hospice care: learning from experience
During my busy clinic last week, I received a call to sign a death certificate for a patient who had died over the weekend. It brought back the memories of the previous night where I had felt that I had failed this patient and his family.
72 hours ago
On the previous Friday, I received a call from my fellow about a patient with newly diagnosed small cell lung cancer who was in the emergency department. I spoke with the patient and his loving family at length, learning about him, his family, his life story and, finally, his diagnosis. He had been having significant decline in his functional status over the past month or so and was diagnosed with (likely extensive stage) small cell lung cancer a week prior. He and his family reported that he enjoyed an active lifestyle, and he and his wife travelled the world. We then discussed all the options for therapy, including chemotherapy. In the end, given his preferences and in light of his liver function and worsening renal function, we decided on hospice care. I communicated that plan with his primary physician.
16 hours ago
I received a call from the patients daughter that they had been home for the past two hours and the hospice nurse had not arrived. Also, her father had been having some difficulty with breathing and the morphine they were prescribed was tablet format.
As it turned out, hospice was arranged over the weekend and the patient was discharged with a Roxanol (Elan Pharmaceutical) prescription. Unfortunately, his regular pharmacy did not carry the drug, so the substitute tablet was given, which the patient could not swallow. The hospice nurse had been delayed because she was with another patient who was also near the end of their life.
With this difficult predicament, I was left with a family who was looking for help, with their only wish that their loved one be comfortable at the end of his life. After talking to a friend of mine who is a hospice coordinator, I learned that the comfort kit (medications such as Roxanol, lorazepam, acetaminophen, etc) that I always thought came with hospice, did not actually arrive with the nurse. It was obvious after thinking about it, hospice nurses do not and should not carry controlled substances in their cars. It needed to be prescribed and arranged to be delivered. Thankfully, the appropriate nurse arrived the following hour and I was able to arrange for medications half an hour later to be delivered to the patients home.
The patient, in the mean time, had become more comfortable, more somnolent. About an hour after that, I received the call that the patient had died.
Reflection and learning
When I look back at the entire experience, what bothered me the most was that this loving family who had asked for help dealing with impending death, spent most of the patients last few hours on the phone frantically looking for help. Two lessons come to mind. First, we need better prognosticating tools. When the family asked me for prognosis, based on worsening performance status and organ function, to their surprise, I mentioned a range of days. But I did not expect it to be two days. I have used Palliative Care Prognostic Score, but in this case, it had its limitations. Clearly, our abilities are limited for prognosis. It probably led to discharging the patient only a few hours before his death.
Second, I lacked a clear understanding of the logistics of how hospice care is delivered. Routinely, hospice nurses have the time to order and have medications delivered prior to the need of patients. The logistics of having the right medications, which may not be carried by all pharmacies in time requires much more planning than writing an order for hospice.
My goal is to share my experience so that others can learn from it to provide more efficient and effective care to our patients. I urge all oncologists to get to know the local pharmacies that can provide medications for comfort during off hours.
Biren Saraiya, MD, is an Assistant Professor at the Cancer Institute of New Jersey at UMDNJ-Robert Wood Johnson Medical School and is a member of the HemOnc Today Editorial Board.
For more information:
- To learn more about Palliative Care Prognostic Score, visit www.eperc.mcw.edu/fastFact/ff_124.htm.