Palliative Care
Palliative Care (PC) is a system of care aimed at improving quality of life for patients and their families. As part of your multidisciplinary team, palliative care focuses on both the physical and psychological symptoms associated with chronic illness. They can help you explore what matters most to you and support your care in a way that aligns with your goals and values.” Palliative care specialists can provide an extra layer of support in addition to the other teams that are caring for you.
Palliative care can be appropriate at any age or any stage of illness. There is no such thing as “too early” for palliative care. If you are an adult living with Duchenne or Becker and have not met with a palliative care team, consider asking to see them at your next visit. You can also visit this site to locate a palliative care team nearby.
Symptom Management
Your multidisciplinary team should screen for both physical and emotional symptoms at each visit and treat accordingly. Palliative care clinicians are experts in pain and symptom management. Many, if not most, patients with Duchenne or Becker muscular dystrophy struggle with pain at some point in their lives. Other common symptoms include:
- Mental health issues such as anxiety or depression
- Gastrointestinal symptoms such as nausea, vomiting, constipation and abdominal pain
- Skin issues such as wounds or rashes
- Sleep difficulties
These symptoms may become more frequent as patients with Duchenne or Becker get older. Palliative care teams can help manage these symptoms, especially if they become more difficult or severe.
Decision Making
People living with Duchenne and Becker and their families face many healthcare decisions over time. These may include:
- Should I/they start a certain treatment?
- Should I/they pursue a certain surgery?
- Is a clinical trial appropriate for me?
Everyone navigates these decisions differently. Often, there is not one clear answer for what a person “should” do. Palliative care teams recognize that each person’s hopes, worries and values are unique. Palliative care clinicians work closely with patients and families to understand what truly matters to them—helping guide decisions that reflect their personal goals, values, and definition of quality of life.
Hospice Care
Some palliative care clinicians have expertise in providing hospice and end-of-life care. Hospice care is a system for individuals who are expected to live six months or less. Like palliative care, hospice also focuses on symptom management and quality of life. In the United States, hospice is provided through an insurance benefit. Hospice care can be provided wherever a person lives, including at home, in a long-term care facility, or a nursing facility.
More information about the difference between palliative care and hospice can be found here.
Watch how Palliative Care can support your family during decision making.