Jan 27, 2023

Family Caregiving —A New Normal: Considering Palliative Care and Hospice Support

Dear Caregiver,

I have two terms I suggest become part of you—Palliative Care and Hospice Support. Each of these services can become an essential component of care for any loved one developing multiple health challenges, particularly when those symptoms signal end of life is approaching.

While hospice is a term we have heard for decades, for many of us the term palliative care is new.

Palliative Care, I only began to understand in recent years. Seven years ago, when my dad was hospitalized, I would walk by a Palliative Care sign at the veteran’s affairs hospital in Richmond. Yes, I said, “I walked by.” I know now my dad could have benefitted from palliative care, and maybe hospice as well. Your loved one can, also.

This article is the third in a series on family caregiving. The first article introduced my experiences with caregiving in support of my dad—a new normal (December 1). The second (December 22), recommended a book, Being Mortal--Medicine and What Matters in the End. Among other medical topics, Being Mortal, includes facts and stories that can inform our actions as we support our loved ones.

What matters greatly to the Capital Caring Health team is for everyone to know that “Advanced illness care is about a better life, not just end to life.” “From a caregiver standpoint we cannot emphasize enough the importance of the goals of care discussions—at the beginning—and that those conversations be continuous at least as long as the patient can express their goals,” says Audrey Easaw, SVP-Philanthropy, Communications & External Affairs.

Goals of Care Discussions. “In all the stages of advanced illness, which include both palliative care and hospice, yes, goals of care discussions are huge,” says Jerilyn Rodgers, Executive Director, Inpatient Services at Capital Caring Health. “It is not just a one-time conversation. It is ongoing as people think through what they want and do not want. Sometimes people are very clear: Some say their goal is to live as long as humanly possible, or maybe the goal is to be comfortable no matter what.”

Rodgers, begins her conversations with questions like, “How are you doing? What is going on in your world? What do you feel you need help with?” “Then we can listen to their priorities. They might say I have a lot of pain and that their top priority is fixing that. And we say, well, here are some options. It is always the patient’s choice or the family’s if the patient cannot make the choice.”

Rodgers continued, “I ask, ‘What do you want? Let’s put that in writing. Let’s select your advocates in case you cannot advocate for yourself. And let’s make sure your goals are communicated so that your wishes are honored. There are all different kinds of goals. Whatever is right for that individual is what we want to make happen.’“

Palliative Care. While a hospice qualifier generally calls for a life expectancy of six months or less, palliative care can be sought earlier.

Palliative Care is focused management of distressing symptoms, explains Rodgers. “Many times, we think of palliative care as managing pain, shortness of breath or whatever is uncomfortable for an individual. It can be pretty much any disease process that gets so uncomfortable that they need more symptom management. Palliative Care, therefore, is pretty broad and not limited to a certain amount of time. And there is no limitation that they must be in their last months of life.

Hospice Support. While Palliative Care supports patients with “chronic, progressive disease and those who may be experiencing pain or other multiple symptoms, Hospice Support, according to Capital Caring Health, is considered when a person is facing any one or many of these circumstances: “Decreased ability to care for themselves. Recurring infections. Unintended weight loss. Decrease in cognitive abilities. Treatment has a negative impact on quality of life. Multiple trips to doctors and emergency rooms. Unresponsive to treatments. Worsening symptoms. Patient/family desires “comfort care.”

“Although hospice is intended to serve those in the last six months of life, it is understood that an individual's prognosis isn't an exact science, adds Rodgers.” We understand that. Medicare understands that. If an individual lives longer than 6 months, a hospice provider can certify that it is appropriate for them to remain on hospice care. Sometimes people stabilize, or even improve. In these situations, discharge from hospice is possible. Patients may re-enroll in hospice later if they wish.”

Easaw says, “Regarding hospice support, we have a lot of educating to do. First, we want more people to know that accessing the hospice benefit is “free” through Medicare (Part A). Secondly, it is so important to access these benefits earlier on in your illness journey, so that you can experience all the benefits, for a longer period. Therefore, that journey is better for the patient, but also for the patient’s family. Do not wait until the last minute. You can receive better care.”

Caregivers, please do not “walk past the Palliative Care sign” as I did. Please give due consideration to palliative care and hospice support. Use of both services, as appropriate, can reduce the number and severity of your loved one’s symptoms or provide more comfort. Now may be the time. Utilizing palliative care and/or hospice support, Easaw says, “in some cases can be life extending, and certainly life changing.”

© Deborah Tompkins Johnson