Ask a PH Specialist
Question: At a recent visit, my physician mentioned involving a palliative care specialist. What is palliative care, and how does it differ from hospice care?
What palliative care means and what it involves are often misunderstood. Palliative care is active, total care of patients whose diseases are not fully responsive to curative therapy. Though this type of care is often thought of for cancer patients, palliative care has been applied to several other chronic illnesses including heart failure, emphysema, kidney disease, dementia and liver cirrhosis.
In addition, many healthcare providers now advocate palliative care plans for patients with pulmonary hypertension. The main goals of palliative care are to achieve the best quality of life for patients and enhance comfort and dignity. This often involves symptom control and trying to best understand patients’ goals of care.
Physicians, nurses, social workers, spiritual ministers and others may work together as part of the palliative care team. Palliative care allows for current therapies to continue if they are helping you to live well. This may include, but is not limited to, your PH medications or oxygen. Symptoms addressed by palliative care include difficulties with side effects from IV PH medications (like FlolanTM), pain, shortness of breath, fatigue, depression, fluid issues and several others that may or may not be related directly to your PH. Palliative medicine doctors may also be able to help you with clarification of issues like advanced directives, living wills and determining if hospice is right for you.
What is the difference between hospice and palliative care?
Hospice is a specific type of palliative care that is provided to seriously ill patients near the end of life. In general, life expectancy is six months or less on average in order to enroll. Hospice can be provided in a variety of places, including your home, nursing homes, hospitals or free-standing hospice facilities. The rules are generally modeled after the Medicare hospice benefit, even if you have private insurance. If a patient lives longer than six months, they may “re-enroll” in hospice for an indefinite number of three-month periods, as long as they still meet the criteria in a physician’s best judgment.
When might palliative care be right for me?
The optimal time to see a palliative care specialist is different for each patient. Typically, consults happen when there is a change in your health status, when PH therapies are not tolerated or when lung transplant is not an option. The misconception that hospice and palliative care are only available when there is “nothing more to do,” or that talking to a palliative care physician is like “giving up” often prevents earlier involvement of a palliative care team.
However, palliative care is a life-affirming service that aims to shift some focus to not only your PH-related issues, but all symptoms that may be negatively affecting your quality of life. Together, you and your physician can determine the appropriate time for palliative care to become part of your healthcare plan to promote the best quality of life possible.