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The term “palliative care” is often thought of as end-of-life care, or hospice care. However, it’s a common misconception that palliative care is meant only for those with late-stage, incurable diseases. People with pulmonary hypertension (PH) at any stage can benefit from palliative care. This type of care can ease symptoms of pulmonary hypertension, help you manage with treatment side effects, and provide emotional support.
“I saw a pulmonologist I trust today,” one myPHteam member wrote. “I thought he was honest with me about PH and the prognosis when none of the current medicines work. We discussed hospice, hospice palliative care, and palliative care. They are all different. I did get to discuss all these options with my family so they can be well-informed about the future we face.”
There’s no need to stop PH treatments while receiving palliative care, so it makes sense to look into these services sooner rather than later. For early-stage pulmonary hypertension, palliative care can help you come to terms with your diagnosis and prevent complication risk factors. In later-stage PH, palliative care services can help you stay at home longer and transition to hospice, if needed. Here are some details you should know about the types of services available throughout your PH journey.
Palliative care is specialized, supportive care for people living with serious health conditions such as cancer or pulmonary hypertension. Unfortunately, people with PH often underuse palliative care because they confuse it with end-of-life care and hospice care. Unlike hospice care, which begins when a person discontinues curative treatment, palliative care focuses on improving the effectiveness of your PH treatments while also helping you feel your best.
People with pulmonary hypertension and their caregivers may need to have difficult conversations about care decisions over the course of their illness. There may be points in your PH journey when you decide that your quality of life is more important than potential gains in time spent surviving PH. Health-related quality of life — your perception of your physical and mental health over time — is difficult to measure and define because it is different for every person.
Quality-of-life discussions are commonly part of advanced care planning for PH because, with time, your symptoms are likely to worsen and limit your ability to live your life the way you want. Palliative care’s goal is to maximize your quality of life based on your needs, not your prognosis. In contrast, hospice care is end-of-life care, for the time when you, your caregivers, and your doctors decide that further treatments are not in your best interest.
Palliative care can be particularly helpful when provided right after you are diagnosed with pulmonary hypertension, so it makes sense to look into available services sooner rather than later. For early-stage PH, palliative care can help you come to terms with your diagnosis, coordinate your health care, and make sense of the financial implications of your diagnosis.
Members of myPHteam members often share how overwhelming it can be to learn to live with PH: “I get overwhelmed by all the stuff I must learn just to stay alive and have a good quality of life,” one member wrote.
Some researchers have even shown that early palliative care (just after diagnosis) can extend the life span of those living with serious illness.
There’s no need to stop your PH treatments while receiving palliative care — your palliative care team specialists will coordinate your medical care with your pulmonologist, cardiologist, and other medical providers.
In the later stage of pulmonary hypertension, palliative care services can help you stay at home longer with supportive care. However, if at some point your medical specialist or palliative care team determines that your treatment is no longer helping, palliative care can transition to hospice care.
Health insurance covers some palliative care costs, but not all. You can receive services in many care settings — your home, an outpatient facility, a hospital, a long-term care facility, or your doctor’s office. In addition, if you’re a veteran, you may have access to free or low-cost palliative care through the Department of Veterans Affairs. Talk with your doctors and health insurance carrier to learn more about your coverage and treatment costs.
Specialists on palliative care teams work together to treat your symptoms and help you feel better. Since pulmonary hypertension affects several body systems and changes almost every aspect of your life, it’s important to have a team of multidisciplinary medical professionals to manage your PH effectively. Your team could include:
People with pulmonary hypertension receiving palliative care alongside their treatment experience less severe symptoms, a better quality of life, and more satisfaction with their treatment.
Palliative care helps with symptom management so you can live your life with less discomfort. As one myPHteam member wrote, “I’m tired of being tired. I do not have any quality of life.”
People with PH seek palliative treatment of symptoms such as shortness of breath, fatigue, chest pain, and a racing heartbeat.
Your palliative care team can help you set treatment goals and match your treatment choices to your treatment goals. For example, an occupational therapist can work with you to structure your day to save energy, helping you avoid exhaustion. Likewise, physical therapists can help build your strength and energy levels so you don’t have to miss out on your daily activities because you can’t keep up.
Sometimes, people with PH lose their appetite. A palliative care dietitian can help you develop strategies to prevent weight loss, such as eating smaller, more frequent meals or incorporating high-calorie snacks and supplements into your diet.
Many of the same pulmonary hypertension medications and treatments that add years to people’s lives also cause unpleasant side effects. You are likely not an expert in all the medicines that treat PH, but sometimes it can feel like you need to be.
One myPHteam member explained this struggle: “Seeing my PH doctor on Wednesday. I have so many questions about the progression of my disease. There are so many medications — my biggest side effect is fatigue. I don’t want to change to another medication if it will only give me more side effects.”
Palliative care specialists can help people with PH weigh their options to find a better treatment with fewer side effects in situations like this.
The financial toxicity of chronic illnesses such as pulmonary hypertension can be harmful to your health. As people live longer with PH, medical expenses accumulate over years of treatment. Worrying about medical bills and your financial stability can cause unhealthy stress levels for you and your loved ones.
A palliative care social worker can help you limit the financial toxicity of PH by:
You and your caregivers may all struggle to talk about your pulmonary hypertension diagnosis. A palliative care social worker can help you communicate better about how best to support you. For example, they could help you plan a family meeting.
Palliative care team members can give practical advice to caregivers about managing day-to-day responsibilities related to your illness. A social worker could help you or your caregivers with:
By involving a palliative care team early on, you’ll give yourself and your loved ones valuable support and easy access to assistance if unexpected or sudden changes occur.
People living with pulmonary hypertension may cope with significant limitations on their ability to live the way they used to. Stress, health-related fears, and sadness take an emotional toll. Research shows that as many as half of all people with PH will experience anxiety or depression.
Studies show that receiving palliative care early after diagnosis results in lower rates of depression in those with serious illness. Trained mental health care providers such as psychologists, psychiatrists, therapists, and counselors are an essential part of your PH health care team to support you and your loved ones during any stage of PH.
For some people, having an incurable health condition like PH brings up the desire to explore spirituality or religion as a source of support or explore a deeper meaning and understanding of life. Your palliative care team could include chaplains or other religious leaders, depending on your needs and beliefs.
Whether you’ve recently been diagnosed with pulmonary hypertension or have lived with your diagnosis for several years, ask your medical specialist for more information about a palliative care referral to improve your health and well-being.
On myPHteam, the social network for those who live with pulmonary hypertension, more than 45,000 members come together to ask questions, give advice, and share their experiences of life with PH.
Have you ever considered palliative care? What types of services are you interested in? If you already engage in palliative care, how has it benefited you? Share your story in the comments below, or start a conversation by posting on myPHteam.
Steven C. Pugliese, M.D.
is affiliated with the Hospital of the University of Pennsylvania in Philadelphia, serving as the director of the pulmonary embolism response team, co-director of the comprehensive pulmonary embolism program, and an assistant professor of clinical medicine. Review provided by VeriMed Healthcare Network.
Learn more about him here.
Amy Harris, MS, RN, CNM
is a certified nurse midwife and trained health literacy specialist..
Learn more about her here.
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