Palliative care, also called comfort care, support care, or symptom management, is any care that is used specifically for improving your quality of life by relieving the pain and other symptoms associated with a serious illness or its treatment. It is typically thought of as something recommended when a cure is not likely, either because your treatment is no longer effective or you have stopped any treatment for your condition.
Palliative care is not only appropriate for those with life-threatening or terminal illnesses, it is used for anyone with a serious illness that needs relief from severe pain, significant symptoms, and psychological effects associated with the illness or its treatment. This may include people with heart disease, kidney failure, chronic lung disease, AIDS, Alzheimer’s, multiple sclerosis, and amyotrophic lateral sclerosis.
Most often, palliative care for patients with a terminal illness is provided by an organization called hospice. Hospice specializes in all aspects of support and palliative care, including symptom control and other comfort care, individual and family counseling, support services, and spiritual guidance.
Although you may associate palliative care with pain medications and sedation to control pain, there is much more to it. While controlling pain may be part of your palliative care, there are many other medical and caretaking issues that make it difficult to care for you when you have a terminal illness. These issues will often multiply and get worse as conditions progress.
Not all of these issues are easily relieved with medication and will require specific other actions on the part of your caretakers.
There are numerous other things that contribute to your comfort and sense of well-being. Palliative care also encompasses looking for and managing emotional, social, and spiritual issues that usually go along with serious illness. It is also crucial for your family and other loved ones to be involved to help them cope with your illness as well.
Palliative care involves a large team of medical professionals who will care for you and contribute to teaching your family how to care for you and manage the burden of caregiving.
In addition to the services described above, alternative and complementary therapies, such as healing touch/massage, meditation, yoga, aroma therapy, music therapy, and pet therapy may be available.
Your team will appoint a team leader who will be responsible for coordinating your care and assuring good communication among all the members and with you and your family. You should give this person and other appropriate members of your team copies of your advance directives.
Palliative care can take place anywhere, depending on your situation and preferences, such as hospitals, nursing homes, hospice facilities, assisted living, your home, and out-patient clinics. Working together allows your team to coordinate your care so that you can move easily from one location to another as necessary, which may prevent multiple hospitalizations or emergency room visits.
The Choosing the Location of Chronic and End-of-life Care section has details on the pros and cons of each location.
Hospice is both a specific healthcare service and a philosophy. Its primary goal is to do everything possible to improve the quality of your life and maintain your dignity when you have a terminal illness. In order for this to be effective, your loved ones must be involved and recognize that everything possible does not need to be done to keep you alive. Hospice encourages you to guide your own treatment, so you will remain in control.
You might decide to take more personal action around the last six months of your life. This is usually after deciding to stop treatment of your terminal illness or other life-sustaining treatment, often after discovering it is not working. You may require a referral from your doctor in order to be accepted into hospice.
Hospice organizations have their own staff, including a physician specializing in hospice care. They will work with your own healthcare providers and primary caregiver as part of the team. Although many hospice organizations have their own facility, they prefer home treatment whenever possible. You can usually reach someone in your hospice at any time.
Using hospice for palliative care has many benefits, most of which we have gone over, with a few drawbacks.
Unfortunately, not all hospice groups provide top-quality care or all of the care you may need. Many hospice groups bill by the day, not by the services provided, so have higher profits when less services are provided. A federal report published July 2018 found that, while you generally can count on hospice to provide good comfort care, some hospice providers do not. They also found that, in order to get more from insurance payments, they sometimes provide unnecessary care or bill for care that was not done.
Your hospice organization should meet the National Hospice and Palliative Care Organization’s (NHPCO) Standards of Practice for Hospice Programs. In addition, it must meet state licensure requirements to deliver care, comply with federal regulations in order to be approved for reimbursement under Medicare, and undergo periodic inspection to be sure they are meeting these regulatory standards.
Most insurance policies, including Medicare, pay for part of the cost for hospice. Unfortunately, if your insurance does not, you are more likely to end up in an emergency room and to get emergency medical interventions.
For hospice care, The Medicare Hospice Benefit program requires you to be diagnosed with a serious illness, have certification from a doctor that you have six months or less to live, have no response to treatment or waive the standard Medicare benefits for treatment of your illness, and/or have a Medicare-approved hospice provider.
Medicaid, a federal and state program that helps with medical costs for people with limited income and resources, has similar requirements for hospice, but also covers room and board, outpatient prescription drugs, and long-term care.