Joe Rotella, MD, MBA, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM).
Palliative care can significantly improve the quality of life for people living with serious illnesses. This care provides life-changing relief from troublesome physical symptoms as well as psychological and practical challenges that accompany illness. Read on to see how it could help you or someone you love.
Palliative care aims to prevent or treat the symptoms of a condition and the side effects from its treatments. This relief is often sorely needed by those who are seriously ill, even when they are getting treatments that may result in a cure.
People with cancer, heart failure, and chronic obstructive pulmonary disease may spring to mind as a good fit for palliative care, but so are people with many other serious illnesses, such as kidney failure, liver disease, Alzheimer’s disease, neurological illnesses, and those with multiple chronic conditions who are not thriving.
For example, palliative care would be perfect for Alice, an 80-year-old woman living alone at home with joint pain and trouble walking due to arthritis, difficulty breathing due to heart failure, and memory loss due to the early stages of Alzheimer’s disease.
Distress related to chronic or life-limiting conditions isn’t only physical. Serious illness often brings with it emotional, spiritual, social, and practical problems that are just as important to address as pain, weakness, or trouble sleeping. A person may need a ride to treatments, help understanding insurance coverage, assistance with finances or childcare, or counseling to ease depression and anxiety.
Palliative care uses a team of experts—doctors, nurses, pharmacists, social workers, psychologists, chaplains, and others—to place the person with serious illness and their family at the center of the process and explore their unique needs, values, and preferences. Alice, for example, fears that she’ll be forced to leave her home, and her family worries about her safety. The palliative care team would meet with Alice and her family to discuss these concerns and develop a care plan to relieve her physical discomfort, coordinate her care with her other doctors, and keep her safe at home and functioning the best she can.
You don’t have to wait until all treatments and potential cures have been exhausted to benefit from palliative care. This approach makes sense any time, from diagnosis, when symptoms or distress first appear, to later in an illness, when a change of course may be needed, or in the survivor stage, when you’re dealing with lingering pain or side effects. It’s beneficial to people with serious illness at any age in any stage. Depending on insurance coverage, this coordinated care may be handled like any other treatment.
Hospice is essentially an intensive form of palliative care that is specifically designed for people who are likely to be in their last months of life. The focus is on comfort and quality of life, but, in some cases, it may be provided along with treatments that help control the underlying illness.
As with palliative care, a trained team that includes physicians, nurses, social workers, chaplains, and mental health professionals converge to smooth the patient’s and family’s path on a variety of levels, easing physical pain as well as addressing emotional, spiritual, and other needs. Hospices may also provide trained aides and volunteers who can assist with personal care and housekeeping services.
This support helps a person focus on living the best they can and sharing meaningful moments with friends and family. Hospice supports hope for living life to its fullest. Indeed, research shows that those in hospice care live just as long as others at the same stage of illness, and more comfortably as well.
Medicare and insurance plans often cover all related charges. In some cases, it may be difficult to estimate a person’s life expectancy and eligibility for hospice. Whatever the reason, if hospice is not the best choice at the moment, you can still ask for palliative care.
When it comes to health care, it pays to plan ahead. Let your family and your medical team know what’s important to you, what treatments you would or would not want to try if you were very ill, and who you would want to speak for you if you couldn’t speak for yourself. These conversations may feel awkward at first, but they can make a big difference for your loved ones should they find themselves in the unfortunate position of having to guide major medical decisions on your behalf. It’s a good idea to put your wishes in writing in the form of a living will and durable power of attorney for health care.
Don’t wait for your doctor to tell you it’s time for palliative care. If you’re in physical, emotional, or spiritual distress, or face practical challenges or caregiver issues, speak up and ask. Being proactive will help you remain in the driver’s seat regarding your health.