Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS) and many more. Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by improving your understanding of your choices for treatment.
Palliative care is a team approach to care. The core team includes doctor, nurse and social work palliative care specialists. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team. The team spends as much time as necessary with you and your family. They become a partner with you, your family and your other doctors. They support you and your family every step of the way, not only by controlling your symptoms, but also by helping you to understand your treatment options and goals.
Your palliative care providers will work with you to identify and carry out your goals: symptom relief, counseling, spiritual comfort, or whatever enhances your quality of life. Palliative care can also help you to understand all of your treatment options. One of the strengths of palliative care is recognition of the human side of illness. In a 2011 survey of palliative care patients, they mentioned these particular needs: "being recognized as a person," "having a choice and being in control," "being connected to family and the world outside," "being spiritually connected," and "physical comfort."
Be assured that you may receive palliative care at the same time that you pursue a cure for your illness. You won't be required to give up your regular doctors or treatments or hope for a cure. Palliative care may also be a good option if you have a serious disease that has prompted multiple hospitalizations or emergency room visits during the previous year.
Does Palliative Care Mean That You're Dying?
Not necessarily. It's true that palliative care does serve many people with life-threatening or terminal illnesses. But some people are cured and no longer need palliative care. Others move in and out of palliative care, as needed. However, if you decide to stop pursuing a cure and your doctor believes that you're within the last few months of life, you can move to hospice. Palliative care does include the important component of hospice, but it's only one part of the larger field. If your family members also need help, palliative care can provide them emotional and spiritual support, educate them about your situation, and support them as caregivers. Some palliative programs offer home support and assistance with shopping, meal preparation, and respite care to give caregivers time off.
Originally, palliative care was developed for people with terminal illness. But within the past decade, it has become a medical specialty that focuses on a much broader range of serious or life-threatening diseases. As the World Health Organization states, "All people have a right to receive high-quality care during serious illness and to a dignified death, free of overwhelming pain and in line with their spiritual and religious beliefs." Today, patients with cancer, heart disease, chronic lung disease, AIDS, Alzheimer's, multiple sclerosis, amyotrophic lateral sclerosis (ALS), and many other serious illnesses are eligible for palliative care.
One of the primary goals is symptom management. The disease itself may cause symptoms, but so can treatments. For example, chemotherapy drugs may cause nausea and vomiting. Also, narcotic drugs to control pain frequently lead to constipation.
By providing relief for various symptoms, palliative care can help you not only carry on with your daily life, but also improve your ability to undergo or complete your medical treatments.
Here are some symptoms that palliative care may address:
- Nausea and vomiting
- Bowel or bladder problems
- Loss of appetite, weight loss, or wasting
- Shortness of breath or labored breathing
- Delirium or mental confusion
- Difficulty sleeping
You may start palliative care at any stage of your illness, even as soon as you receive a diagnosis and begin treatment. You don't have to wait until your disease has reached an advanced stage or when you're in the final months of life. In fact, the earlier you start palliative care, the better. Anxiety, depression, fatigue, and pain can set in at the beginning of treatment. Palliative care teams understand the stresses that you and your family face and can help you to cope.
Talk to your doctor about a referral to palliative care. In most cases, patients receive palliative care in a hospital setting, but services can also be delivered in a patient's home, a hospice, or a long-term care facility.
How To Find Palliative Care
First, ask your primary care doctor for a referral to palliative care. Remember: you don't have to give up your relationship with your regular doctors to receive palliative care services. The palliative care team will work with your other doctors. In most cases, patients receive palliative care in the hospital. But other health care settings offer palliative care, too, including assisted living facilities, nursing homes, outpatient clinics, and hospices. Your doctor may inform you about local palliative care offerings, but if not, you can use the resources below to locate palliative care in your community.
Most insurance plans cover palliative care treatment in full or partially. Typically, Medicare and Medicaid also cover palliative care. If you're concerned about costs, speak to a social worker from the palliative care team. Most doctors welcome the services that a palliative care team provides to their patients. However, on rare occasions, a primary care doctor might hesitate to make a referral. If you encounter this problem, ask your doctor for an explanation. You can also ask the palliative care team to help you explain why you would like such services. Then you can speak with your primary care doctor about how palliative care could benefit you.
Hospice And Palliative Care Are Not the Same
Understanding the differences between Hospice and Palliative care is important. Many people confuse hospice care, thinking they are one and the same. Although they share similar philosophy, the delivery of care is different. Both hospice and palliative care focus on quality of life or "comfort care," including the active management of pain and other symptoms, as well as psychological, social and spiritual issues often experienced at the end of life. Here are the following similarities and differences in hospice and palliative care:
- A Medicare benefit, hospice care is available for patients whose life expectancy is six months or less, as determined by their physician
- Patients must sign a form acknowledging that they will forgo curative efforts
- Hospice care takes place in the home, long-term care facility, or hospice residence
- Hospice extends care to the family into the period of bereavement
- Palliative care services does not depend on life expectancy, are best introduced early in care, and may be pursued at the same time as curative efforts
- Palliative care is often provided in acute-care hospitals and is also offered in long-term care and post-acute care facilities
- Palliative care can begin as early as the time of diagnosis, even when aggressive treatment is still being sought
- The goal of palliative care is to provide a better understanding of medical care choices, detailed practical information and assistance, and emotional support for the patient and their family
- Families should speak with their physician early on about prognosis and goals of care, and ask about contacting a hospice or palliative care service