The end is not near. That may be the best way to start a discussion on palliative care, so as not to confuse it with hospice care. The hospice community has done an excellent job of educating consumers on the value of hospice care as a compassionate, family-centric, end-of-life service. Family members who have seen their dying loved ones cared for so expertly by hospice personnel have in turn done their part to tell the powerful hospice story to their personal networks.
And now, we must champion the value of palliative care. The National Cancer Institute has an excellent explanation of a variety of topics that fall under palliative care, but here’s the description they use -and one I support: “Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease…it is an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of an illness and its treatment, in addition to any related psychological, social, and spiritual problems. Palliative care is also called comfort care, supportive care, and symptom management.”
For purpose of today’s discussion, I’m focusing on palliative care for those managing three or four chronic conditions, such as diabetes, hypertension, or chronic obstructive lung disease or heart failure. These individuals are not necessarily near death, but their conditions are serious and best managed with the assistance of a care team member who is trained in palliative care and able to steer those with chronic conditions – or their family members – to a higher level of care. This person could be a nurse, a dietitian, or a social worker. Regardless of their professional title, I refer to them as guardian angels.
In my own family’s experience with palliative care following the complicated, high-risk surgery and long-term recovery of a loved one, the palliative care coordinator guided us through the darkest days of not eating, depression, and general malaise. We didn’t necessarily need a physician or an advanced practice provider for this phase of the recovery, but we certainly needed palliative care. Far too much of a loved one’s physical and emotional recovery is placed at the feet of untrained family members who can’t tackle another item on the get-my-loved-one better to-do list without beginning to impact their own health.
But we shouldn’t need to wait that long. Ideally, a palliative care coordinator is available at or near the start of a health situation that needs coordinated expertise beyond what the physician or an advanced practice provider can or should offer directly.
How do I find a palliative care coordinator?
If your practice is involved with a progressive physician organization, you likely already have access to a care team at your practice. With additional, yet convenient access to either in-person or online training, the care team member can become a palliative care coordinator.
The training pulls largely from motivational interviewing techniques and encourages empathy as one works with a patient and family to “tell me more,” or ask, “how can we work through this issue together to find a satisfactory resolution?
Through training, members of the care team discover the eight domains of palliative care:
- Structure and processes of care
- Physical aspects of care
- Psychological aspects of care
- Social aspects of care
- Spiritual aspects of care
- Cultural aspects of care
- Ethical and legal aspects of care
- Care of imminently dying
Delving into an array of considerations, from health assessment, medications, emotional health, location of care, nutrition, cultural traditions, family and friend support networks, and spirituality – all the way to living wills and advance directives for healthcare decisions and power of attorney – the care team member knowledgeable in palliative care is a critical go to source for guided assistance.
Surprising to some, palliative care is not treated like a visiting nurses or hospice expense. Instead, as part of most payors’ commitment to whole person care, palliative care is a covered service under the traditional evaluation and management code and provider delivered care management code set.
Perhaps it took a pandemic for us to take a closer look at palliative care, but now that we have, I hope you’ll join me in taking this conversation to the next level. Let’s be like our friends in the hospice community and use public education and word of mouth to tell a positive message about an important service that reaffirms the value of coordinated, compassionate care.