Recently speaking with a friend whose mother was sick, I suggested she should look into palliative care. The response was a look of shock and surprise. “She’s not dying.”
Deborah Araya, Physician Assistant at University of Maryland Charles Regional Medical Center (CRMC), said she gets the same response when she talks to patients because “they don’t really understand that palliative care is not hospice care. They are two different medical sub-specialties.” They both have a “holistic approach that helps both the families and the patients”. The founder of palliative care recognized that if hospice care “worked so well at end of life, why would you wait to end of life to provide this care? So let’s move it back to the time of diagnosis of a life threatening illness…. So palliative care is holistic patient-centered care that can be provided while the patient is being treated for the illness and long before they are ready for hospice.”
In the video interview below, we also covered how to discuss advanced care directives and how to approach end of life care with family and caregivers. Mary Hannah, CRMC Manager of Population Health, said it’s best if families discuss this well in advance of being at the hospital and the “conversations happened outside the acute care environment, not once they are in the hospital in distress or when the patient can no longer make their own decisions. …. sit down prior to that point, around your own kitchen table, rather than waiting for your family to make those decisions in an ICU waiting room, which is the hardest time.” Mary conceded that, even then, the conversation can be difficult so she suggested a number of resources including The Conversation Project.
Other resources Mary suggested are:
- Advance Directives forms from the Maryland Attorney General
- Center to Advance Palliative Care
- Being Mortal: Medicine and What Matters in the End by Atul Gawande
I read the recommended book, Being Mortal, a few years ago and it was truly life changing. I wish I had read it prior to caring for my mother when she was being treated for pancreatic cancer. I think I would have done a better job being her caregiver and also helped relieve some of the stress and guilt I had as a caregiver.
Palliative care can be helpful to not just the patient, but to their entire care giving team — and in many cases will not only improve the quality of their life, but also the quantity. I hope the video interview helps you start important conversations in your family and provides some understanding on how palliative care can help you.