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.