Learning the ins and outs of palliative care for PF patients
Do you confuse palliative care with hospice care? Here's an explainer
I’ve been told by more than one patient that they were told to go home and spend the time they have left enjoying a rocking chair on the porch. Whether that is actually what they were told or rather the message they heard is not important to this discussion.
When I was diagnosed with IPF in January 2017, my doctor was very candid about what the future would look like. In his next breath, he told me what he believed to be the best treatment plan for me. While a decision on transplant was not a part of that initial discussion, it was one of the options discussed. Those options were transplant, transfer to another transplant center, and palliative care.
Transplant decisions are individual choices. I was diagnosed at age 59. The Inova Advanced Lung Disease and Lung Transplant Clinic in Virginia has a maximum age at which they will consider lung transplant for a patient, and I was well within their age consideration. This cutoff age for lung transplants varies by transplant center.
But age is simply one factor that may disqualify someone. A variety of comorbidities may delay transplant consideration and, in some cases, eliminate transplant as an option entirely.
Timing for transplant is an art. You need to be sick enough for the transplant to be the best option. Additionally, you cannot be so sick that surviving the process is unlikely.
What is palliative care?
Palliative care may be the best choice if a patient is either too old for a transplant or chooses not to pursue one due to personal reasons.
I often hear in support groups or read on social media discussions that confuse palliative care with hospice care. I usually explain the difference by acknowledging that hospice care is end-of-life care to ease the transition between life and death, while palliative care aims to maintain a quality of life for both the patient and the caregiver. This is because the patient’s quality of life also affects the caregiver’s quality of life.
Palliative care is a treatment strategy for anyone facing a serious illness like IPF. A palliative care team will develop a plan to address specific symptoms that affect a patient’s quality of life. For IPF patients, a good example of a symptom might be a chronic cough.
A patient requiring oxygen may work with a respiratory therapist on improving breathing techniques. The goal would be to reduce the effects of the illness on the patient and their family. This also will likely reduce the stress of having a serious illness.
In my case, the Inova clinic does not provide palliative care support as a direct function of the hospital. Instead, they work with their patient and caregiver population to identify organizations that provide palliative care support. A palliative care team works in concert with the Inova care team to create a treatment plan that is not contraindicated and is in the best interest of maintaining a patient’s quality of life.
Finding palliative care
Not all patients will have access to the type of support offered by Inova. In such cases, organizations like the National Hospice and Palliative Care Organization may be a good source of information. One of their programs is CaringInfo, a comprehensive guide for patients and caregivers.
The goal of the organization is to provide resources to educate and empower patients and caregivers, including things you should know about palliative care and finding the right provider for your situation.
Yes, I am post-transplant
Understanding and having a plan for palliative care is important for me as a post-transplant patient. My bilateral lung transplant in July 2021 didn’t make me invincible or immortal. The survival rate for post-lung transplant patients is greater than 60% at five years. So I’ve taken the time to understand palliative care and the benefits it may provide to my quality of life.
I’ve put an advanced directive in place to memorialize what I want. It appoints my wife, Susan, as my healthcare agent so that she can make decisions when I’m unable to. It also describes the life-sustaining care I will accept. I’ve also arranged for and prepaid my final expenses.
Have you considered palliative care? Could it make a difference for you, your caregiver, and your family? Introducing you to palliative care is another way I can make every breath count.
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