By Charles F. von Gunten, MD, PhD
I made a home visit to an elderly woman with advanced myelodysplastic syndrome-a kind of cancer where the bone marrow stops producing enough red blood cells, platelets, and white cells to fight off infection. She wanted advice about pain and sleeplessness. She gets weekly blood tests and near weekly infusions of either blood or platelets. There is no treatment that can make her bone marrow start working again. She has been offered enrollment in hospice care, but has refused.
On my examination, she was forgetful and frail in appearance. There was some mild confusion. She has hip pain mostly when she walks, but she is comfortable when she is sitting. I was able to provide her medications to improve her pain management. Her nurse practitioner (case manager) said the change in her quality of life was dramatic!
When I walked into her home for a follow-up visit, I expected this patient to be satisfied with having her pain under control; instead, when I asked her what she thought about her pain being managed, she replied “So what?! So what if I am sleeping well and have minimal pain, and can think clearly. So what if my daughters aren’t as worried about me—is it just to go back and forth to the outpatient infusion center and live to the next infusion?”
Her response to me was a great reminder that palliative medicine is not just pain and physical symptom control; neither is it just ‘good communication skills’ to get people to tackle the physical, emotional, practical and spiritual dimensions of an incurable illness. Those are the entry-way or baseline things we do—but the goal is to move beyond just countering deficits to healing—making a person whole again. Whole persons need meaning in their lives—you can’t give it to them (like a pill or a procedure) they need to find it for themselves, but with some support.
The beauty of Palliative Medicine is in the investment in whole-person care. In addition to pain and symptom management, the importance of looking at the emotional, spiritual and social needs to find meaning and value in living. Perhaps in this situation, using healing modalities such as art therapy (she use to paint), dignity therapy, and pet therapy—can help patients find meaning in their current situation.
Although this patient wasn’t enrolled in a hospice program where those things are easy to include in the plan of care, it doesn’t mean I can’t inform her of these available resources—it may be more work on my end to help identify these additional therapies; but, if I think of these things as ‘non-medical, and not part of the physician’s job’ as I so often hear from medical students and residents, then I am only a symptomatologist, and not a palliative medicine clinician. This patient is just one example of all of those with serious advanced illness who need the healing we have learned how to provide—the challenge is how to make it meaningfully available when the person is not yet enrolled in a hospice program.
Charles F. von Gunten, MD, PhD is the Provost at The Institute for Palliative Medicine at San Diego Hospice. As one of the foremost experts in the field of palliative care. Dr. von Gunten has published and spoken widely on the subjects of hospice, palliative medicine, and pain and symptom control.