Learning the ins and outs of palliative care for PF patients
Do you confuse palliative care with hospice care? Here's an explainer
What choices do you have when you have idiopathic pulmonary fibrosis (IPF) and lung transplant isn’t an option?
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
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.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Paul Carey
I was diagnosed with IPF in June, 2018, following several years of escalating symptoms and misdiagnoses in spite of good-faith efforts of my medical caregivers to reach a conclusive diagnosis. At various times I have been treated for related problems such as sleep apnea and COPD, with minimal relief. At my worst, I had difficulty in speaking a full sentence without a pause to draw an extra breath.
These circumstances speak directly to the difficulties associated with IPF diagnosis and NOT - I say WITH EMPHASIS - the quality of care on the part of my providers. As a patient, I am personally informed on the elements of my own care. This is the result of my volunteer work as an Emergency Medical Technician (EMT) over a period exceeding 10 years, until tne day, in 2015, I became aware of something serious when I first had difficulty lifting a 90 pound paitient on a cot into our ambulance.
I have always monitored my O2 saturation, using a pocket oximeter to measure the cycle of my O2 de-saturation in real time. This si something every suspected IPF patient should do - regardless of any medical training or experience. My elusive diagnosis eventually required a surgical lung biopsy, which was positive for IPF.
I am single, retired, and live on a tributary of the Chesapeake Bay. Maintaining my home and acerage affords much opportunity for a degree of exercise. I take Ofev, with the usual side effects, which I consider manageable. I have been sleeping with O2 at 2 litres since December 2019. I have, by training and disposition, a strong bias against a sedentary lifestyle, as I the IPF-driven adaptations that become medically advisable as my disease progresses. Fortunately to date, my progression has been slow, and therefore, I am able to maintain activities that are useful to me - and others. I'm a 74-year old on Medicare and ineligible for lung transplant, I am, however, deeply grateful for the many and increasing number of interventions that are becoming available.
I refuse to abandon the HOPE that lies with the future. I already understand such future discoveries may not be in time for me. I CAN and do willingly participate in drug trials, having recently completed one of them regardless of the probability I was taking a placebo for a full year. I'm now enrolled in a second drug trial.
I am open to, and recognize the value of, Palliative care when and if it becomes appropriate to my circumstances.
As to the matter of end-of-life and related preparation, I personally believe in the greater journey that lies ahead, and therefore find much perspective and belief in the Faith that I embrace. I would likewise would urge all who share this journey to sincerely consider their innermost spiritual promptings from the Greatest Healer of all.
Samuel Kirton
Paul,
Thanks for reading my column and for your note. The challenge of an accurate and timely diagnosis has been a topic of much discussion among pulmonary fibrosis (PF) patients over the years. I think progress has been made especially when the patient is seen in a care center environment with strong knowledge of PF. Unfortunately, those care center network sites are not always available to everyone based on geography.
Also, I applaud your participation in clinical trials of new drugs. I wish more people would participate to allow trials to be conducted with an appropriate-sized sample of the population.
You making a choice about when and if palliative care is appropriate is to be commended. So many people avoid making that decision because they do not understand the impact it can make on their quality of life.
Please come by again soon and let me know how you are doing.
Sam ...
Terri Gordy
Thank you for your column, Samuel, and for sharing your story, Paul. It’s very helpful to me. I am a 60-year-old female diagnosed with PF with underlying Sjogren’s, an autoimmune disease. My lung disease is severe and progressive. I survived stage 4B endometrial cancer, only to be diagnosed with lung disease last year though I’d had symptoms (SOB, cough, etc.) for years. (My rheumatologist was the one who noticed my lungs sounded “funny” and referred me to a pulmonary doctor.) I continue to work FT as a proposal manager, 100% from home, for a great company and a very understanding manager. I plan to retire at 64, but if my disease continues to go south as it has been, it may be sooner. I’ve been rather depressed about the whole deal. But this week, I realized while I can’t control what the disease does, I do have the power to do some things! I started pulmonary rehab last summer but had to stop due to another health issue and then surgery and recovery. I have an appointment to get re-evaluated next week to start the program over. It helped me before, physically, mentally, and socially, though it’s a huge time commitment. I’ve also decided to look into palliative care and have a consult appointment later this month. I’m curious to see what kind of help they can offer me. I also have a psych appointment in August. My husband has been my rock through everything, but I can’t continue to expect him to carry the weight of my mental burden. Long story short, I need help dealing with this diagnosis and with the fact that I will likely not get better. (I believe in God and pray, but I am also a realist.) I use supplemental oxygen only when I exercise. I am on CellCept and am trying to get on Ofev. My insurance company denied my request for Ofev, but my doctor has appealed their denial, and we’re waiting for the outcome. I try to maintain a positive attitude, as I know from experience that it made a big difference in my cancer journey. I think the rehab and other interventions will help me tremendously.
Samuel Kirton
Hi Terri,
Thanks for reading my column and sharing some of your story. There is a lot in your note to unpack. This is a story similar to what son many patients experience. I am not sure where you are located or being treated. It does seem that in spite of some of the issues you have experienced you continue looking to the future. You are correct you cannot control what this disease does. Those things in your control seem to be included in your plan. If you are being seen in a Pulmonary Fibrosis Foundation Care Center Network facility perhaps you will consider seeking out their social worker on the team. Please come back to let me know where you are and where you are being seen AND how you are doing.
Sam ...