Palliative Care 101: Starting the Conversation

By Fran Rogers, MSN, CRNP; Temple University Hospital; Pulmonary Hypertension Professional Network, Chair; PHA Board of Trustees, Member and Namita Sood, M.D., FCCP; University of Texas Health Science Center at Houston

When diagnosed with pulmonary hypertension (PH), patients and caregivers are faced with many important tasks: meeting their PH team and developing a trusting relationship, learning about PH, and coping with the medication regime deemed best for their particular type and degree of PH.

The diagnosis can be physically, emotionally and spiritually overwhelming. There is much to absorb and accept, so conversations about palliative care are often set aside. Many patients may not know how valuable a role palliative care can play in helping them as they move through diagnosis and treatment.

Palliative Care is specialized medical care for those faced with a serious illness. It is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. It is meant to compliment the care given to patients by their PH specialists and does not hinder any PH specific therapies that those specialists feel are necessary.

It is a multidisciplinary approach that focuses on symptom management, shared medical decision making and psychological and spiritual support. An effort is made to match the patient’s goals with treatment choices that present themselves at various stages of treatment. Acknowledgement is given to the fact that goals and treatment options will change over time.

Think of palliative care as a team sport, and the patient as the captain of that team. As in any successful team, clear communication is key. One of the great benefits of this care model is the importance placed on allowing a patient’s voice to be heard.

What one patient may feel is important at a particular point in their illness may be very different from what another patient at a different stage in their disease may feel. For instance, a newly-diagnosed patient may need help in building rapport with their PH team, while a patient who is progressively ill may need help with advanced care planning, such as transitioning to hospice care. The palliative care team can be of great support to both of these patients.

Palliative care programs can take different forms. Some are located in hospitals while others are associated with home care agencies. But they all share the same goals: maintaining hope, empowering patients and improving outcomes.

Some questions a palliative care team member may ask the patient:

  • What do you understand about your illness?
  • What does a good day look like for you?
  • What are your fears?

We can expect the course of PH to have peaks and valleys, and palliative care will assist with treatment decision making as well as complex care coordination. The team can be with you through the highs and lows, working hand in hand with your PH specialists.

It is also important to understand what palliative is not. It is not hospice care. Nor does involvement in a palliative care program mean the patient is giving up or dying. Quite the opposite is true: The aim is to improve the quality of living. This may be pursued through aggressive pain management or it can take the form of social or spiritual support. However, as a part of an integrated model, palliative care can help patients move into hospice care if appropriate.

Ideally, palliative care should be integrated at diagnosis and continue through the entirety of a PH patient’s life. We’re not there yet, but raising awareness among patients about palliative care will hopefully encourage more people to start the conversation with their PH health care providers early on in the treatment of their disease.

If you haven’t discussed palliative care with your PH health care team yet, I encourage you do so. Don’t hesitate to speak up! It may be one of the best conversations you will ever have with your PH care providers.

Why We Chose Palliative Care for Our 13-Year-Old Daughter

By Amanda Howard, mother of a child with PH

My husband, Chris, and I live in Perry, Iowa, about 45 minutes south of Des Moines, with our three children: Abby, 13, Grace, 10, and Blake, 4. My connection to PH is through our beautiful teenage daughter, Abby.

Abby has fought PH since she was a baby, and there were a few times we almost lost her. When Abby was 6 years old, her doctors gave us a clean bill of health, and we were so happy. Initially, her doctors falsely believed that Abby had outgrown her PH. They now believe an echocardiogram had given us false readings. But, it wasn’t until Aug. 31, 2017, that we realized this. I will never forget the look on the face of Dr. Fletcher, Abby’s cardiologist, when he delivered the news.

We first learned about palliative care when Abby was hospitalized in February with two viruses. My first thought was, “No, we don’t need it. My daughter is fine. She just has two viruses. We will fight them, and she will be back in no time.” I remember feeling frustrated with Dr. Fletcher for even suggesting it. I felt like he was giving up. I was also frustrated with her pulmonologist, Dr. Sammut, because I felt like he as giving up, too. I remember thinking that it must be the same thing as hospice care. So, when Dr. Weaver, a pediatric palliative care physician, came in to talk to us about it, I told her that. And, I told her that we didn’t need her because Abby was fine and she would get over this. I said, “Please, just give her time. She just got diagnosed again in August. The medications haven’t had time to work.” Dr. Weaver took my hands and said, “Amanda, this isn’t hospice. We are just here to provide extra support for Abby and your whole family.” She told us that Abby would still receive treatment, and she promised that they were not giving up on her. She explained that palliative care was there to help with support, pain management and help patients and their families adjust to their new life. She hugged me and asked me if I would let her help us. I agreed and signed the paper work.

I decided to try palliative care because Dr. Weaver took the time to explain it to me without pressuring me to do it. She helped make me comfortable and took the time to gain my trust.

I would define palliative care as an amazing support system for families that are dealing with a “new normal.” I would say it is not hospice, but extra support to help a family cope. I would encourage others to give it a chance if the opportunity presents itself. You will find it a great support system, with the goal of helping your family live the best life possible.

Our palliative care doctors help Abby with pain management and provide support for me and my husband during meetings with Abby’s PH health care team. They have also helped my two other kids better understand Abby’s disease.

Some of the ways in which Dr. Weaver and her team have supported Abby may seem small, but they are significant. For example, they taught Abby to sing a song in her head to help her get up slowly when her blood pressure drops. Dr. Weaver asked Abby what her favorite song was, and then they both danced to the beat of the song and they practiced getting up slowly. Abby was giggling by the end. Abby and our whole family are glad we have them on board. Just a few weeks ago, Dr. Weaver knew I was having a hard time, so she called me just to check in and ask how I was doing. That is what palliative care does and how it helps our family cope with our daughter’s PH.