The staccato words coming over the speaker phone from my friend Molly bounced around like the basketballs we played with as young women back in the day.
My dear friend’s dad was struggling with the effects of esophageal cancer, and I had called to check in and extend some long distance support. At that moment, I found that her family was in a whirlwind of indecision.
“They keep pumping him with drugs,” she said.
“Now he has shingles, too. He is in so much pain.”
“They want to stuff a breathing tube down his throat. They say it may help him. I just want him to be comfortable.
“I’m not ready for him to die; hospice will stop all his treatment and he will die.”
“I can’t do that, I want him to know that we are fighting for him all the way. We can’t give up on him, maybe he can get better. I just don’t know yet.”
“The whole situation is horrible.”
“I just don’t know what to do, Ramie.”
After a lot of active listening, I asked her, “Have you looked into palliative care?”
“I don’t know what that means,” Molly said. “How is it different than the treatment he is getting now, or the care he would get in hospice?”
I never really knew much about this treatment option before our journey with Norma. Tim’s sister, Stacy, received palliative care briefly before she died, but that was in a hospital setting and it felt more like hospice care at that point in her struggle. But we now better understand what palliative care is, and this post is to help others understand it too.
After extensively reviewing the useful resources on the Center to Advance Palliative Care’s (CAPC) website, I had three clarifying questions. Below is my conversation with Allison Silvers, CAPC Vice President of Payment and Policy, that I thought might help our readers:
Tim and Ramie: We are finding through the conversations on our closed Facebook caregiver group that there are some misconceptions about palliative care. We have noticed that some people think it is the same as hospice, while others think it is strictly for pain management. Can you help clarify these or other common misconceptions that you have come across?
Allison Silvers: Thank you for bringing this up. There are two definition issues you’re raising. First, palliative care addresses patient and family quality of life at any age and any stage of illness. Hospice is a defined benefit to bring palliative care to one specific population, people with an expected prognosis of six months or less. But in reality, people should receive palliative care based on need, not prognosis.
The other definition issue is who should receive palliative care. It is not people experiencing pain or other symptoms, but rather people diagnosed with a serious illness, which actually has a formal definition. “Serious illness” is a health condition that carries a high risk of mortality AND either: negatively impacts a person's daily function or quality of life; or excessively strains their caregivers. So if its managing pain in the context of a serious illness, that’s palliative care.
Tim and Ramie: Is there mental health support available for caregivers? What might a palliative-care social worker do for a caregiver who is breaking down emotionally?
Allison: Yes! High quality palliative care must include emotional and psychosocial support for caregivers. There are actually national guidelines for the delivery of palliative care, which includes this as one of eight domains of care. The role of the palliative care social worker can vary widely. But yes, they do provide mental health counseling when they are licensed to do so, as well as provide expert communications on hopes, fears, expectations. And connection to formal mental health resources when needed.
Tim and Ramie: Is the reason that you have to request palliative care simply because there are not enough palliative care providers to serve all who qualify? We do not see a down side to having this support, and we are learning that it actually reduces the overall cost of care. Why would it not be available to everyone with a serious illness?
Allison: LOL! CAPC actually exists to try and make palliative care available to everyone with a serious illness, and yes, you are correct, there are often cost benefits on top of the quality of life benefits. We recommend that patients and families ask for it because right now, it is not “standard of care” to include palliative care in the face of serious illness. Even now, too many doctors and nurses think palliative care is only for those immediately dying and therefore don’t think many of their patients are appropriate for it. So, there might not be another way to even gain access except to ask for it.
Sadly, Molly’s dad was unable to take advantage of these benefits before he died.
The biggest take-away from my conversation with Allison is that palliative care can be started the moment a serious illness is diagnosed. A person does not need to be in their last days or months of life to benefit from it. Palliative care is available in conjunction with other provided care, and conventional treatment does not have to stop.
It is also important to note that this type of care provides a support system that otherwise is not available. The whole focus is on the best possible quality of life, thus allowing more time for people to process everything with the doctors, nurses, social workers and other specialists.
And the great news is that most insurance plans, including Medicare and Medicaid, cover palliative care. From our perspective, it is hard to understand why anyone with a serious illness would not choose to take advantage of palliative care. One just needs to ask for it!
For some additional, user-friendly information from CAPC make sure you click here. It might just change your quality of life.
To find a palliative care practitioner near you, click here.
To avoid the panicked situation Molly’s family found themselves in during her dad’s medical crisis, follow the link to our blog post about “the conversation” and advanced directives.
As always, if you or someone you know could use some extra support as a caregiver come join the amazing group at Miss Norma’s Caregiver Retreat.