Palliative Care Can Improve Your Quality of Life
Palliative care is specialized medical care for those with serious illnesses. In addition to being used throughout your brain tumor journey, this life-affirming approach to care may also be used for end-of-life care in a hospice setting. The focus is on providing you with relief from the symptoms, pain, and stress of your brain tumor while improving quality of life for both you and your family.
Palliative care specialists work together as a team to provide an extra layer of support. It is appropriate at any stage of your brain tumor journey and can be provided along with treatments that are meant to cure.
Keep in mind that you do not have to choose between aggressive treatment and palliative care. Even as you undergo treatment, you can ask the palliative care team to help manage your side effects from treatment, such as headaches, seizures, fatigue and mood changes or ask for counseling and support.
Letting Your Doctor Know What You Want From Palliative Care
If you are considering palliative care you should make your doctor aware of your wishes and ask for a palliative care referral in your area. Speak to your doctor openly and honestly about what quality of life means to you: spending more pain-free time with your family, having your symptoms aggressively treated, making your own decisions about your care.
Let your doctor know about any personal, religious or cultural belief so that it can be integrated into your care and treatment decisions. Now may be the time to also tell your physician what curative treatments you may or may not want, such as resuscitation of your heart were to stop or artificial nutrition by feeding tube if you become unable to eat. These discussions are a way of gaining greater control of your treatment protocol.
Meet the Palliative Care Team
The palliative care team – typically made up of a doctor, nurse, social worker and spiritual counselor – will develop a specific palliative care plan for you, based on your conditions and personal preferences.
Today, many of the top medical centers in the United States and abroad, including major teaching hospitals, offer palliative care programs. Physicians and health care professionals with board certification in palliative care may include:
- Radiation oncologists
- Physical medicine and rehabilitation specialists
- Social workers
Team members may also include massage, art and music therapists, pharmacists, nutritionists, yoga therapists, trained volunteers who may provide emotional support and companionship and most importantly, you and your family. A social worker may help you and your family deal with the emotional stress of your diagnosis and treatment. A chaplain is often available to talk through religious and spiritual beliefs and questions.
The team will stay in close contact with your neuro-oncologist and primary care physician. You can depend on them to help clarify confusing medical terminology and procedures so choices for care are better understood and informed decisions can be made.
Finding Palliative Care
You may want to begin planning for palliative care right after you are diagnosed. Ask your doctor, nurse or social worker about options. You will likely need a referral for this service. If your hospital does not offer palliative care, you may be able to get it from another organization at your home, assisted living facility or nursing facility.
Getting Insurance Coverage
In most cases, your insurance company will reimburse hospitals for palliative services beyond doctor visits and care related to the end of life. Policies vary, so you or your caregiver will need to contact your insurer to inquire about coverage.
You will rarely find the term "palliative care" in your insurance policy or get a separate package of such services. Such services tend to be part of the insurer's general offering.
Medicare may cover outpatient treatments and medications for palliative care, including visits from doctors, nurse practitioners and social workers. Private insurers cover some treatments and medications, but generally they do not provide a specific package of benefits. Often the treatments you are looking for are listed under hospice or chronic care benefits.