Palliative care and hospice care have a common purpose: to provide compassionate care and relief from pain and stress to people with serious, life-limiting illnesses. But the goals of each are different.
Palliative care can be chosen by a patient at any stage of an illness. The illness doesn’t have to be immediately life-threatening; some examples of long-term illness for which palliative care may be appropriate are chronic obstructive pulmonary disease (COPD), Parkinson’s disease, dementia, and some forms of cancer.
In palliative care, the patient can continue treatment to cure their illness or extend life while managing symptoms. They may choose palliative care to relieve pain, nausea, fatigue, and other symptoms of their illness, or side effects from medical treatment.
Hospice care, which is actually a type of palliative care, is for patients who are no longer pursuing a cure for their illness, and generally have a prognosis of six months or less to live. The goal is to control and manage pain and other symptoms, while improving quality of life in the time they have.
Hospice care is appropriate when it’s no longer possible to cure a serious illness, or the patient no longer wants to go through difficult treatment that has a limited or uncertain likelihood of improving or extending their life. This is a decision that the patient should make in consultation with their doctor and the hospice director.
Entering hospice care does not necessarily mean an end to all medical treatment. If a patient is getting chemotherapy to treat cancer, or dialysis for kidney failure, for instance, those treatments would end. But if the patient also has high blood pressure, treatment for it would most likely continue.
Over time, palliative care could transition to hospice care, or could increasingly become comfort care, if the patient’s healthcare provider determines that treatment is no longer effective, and the patient’s prognosis is six months or less.
Where care takes place
Both palliative and hospice care can be provided in any location – at home, a nursing or assisted living facility, or hospital.
The need for palliative care in hospital emergency rooms, where the focus is on aggressive, life-saving interventions, has also become an issue. With an increase in the U.S. elderly population, visits to the ER have increased among seniors as well. At least one in six ER patients is older, according to the Centers for Disease Control, and half of those are in their last month of life. Consequently, more ER doctors are becoming certified in palliative care or working with palliative care teams in order to decrease patients’ suffering and repeated ER visits, and allow patients to return home, as most say they prefer.
In 2015, a team of medical experts created the Palliative Care and Rapid Emergency Screening (P-CaRES) tool, a simple list of questions to help doctors determine the level of care an ER patient needs.
Costs of hospice and palliative care
Medicare covers the cost of hospice care; palliative care, however, depends on the patient’s coverage and treatment plan. If the hospice patient lives beyond six months, Medicare will continue to pay for services if the doctor certifies that the patient is terminally ill, and is not receiving treatment to cure the illness. The patient can also choose to leave hospice for a time and return later.
Typically, private healthcare insurance covers the costs of both hospice and palliative care, depending on the scope of care, but it’s important to check with the provider.
Conversations with healthcare providers and family
In order to make the best healthcare decisions, the patient has to fully understand their condition and treatment options. Good doctor-patient communication is essential, but can be challenging. According to the National Institute on Aging (NIA), a doctor will only wait an average of 18 seconds before interrupting a patient. When consulting with a healthcare provider, the NIA recommends that the patient:
- Make a list of concerns in order of importance.
- Write down all medications and supplements.
- Note all health and life changes since the last doctor visit.
- Ask questions if any of the doctor’s explanations or instructions are unclear.
- Bring up problems even if the doctor doesn’t ask.
- Consider bringing a family member or friend.
- Let the doctor know of any concerns about a specific treatment and its impact on the patient’s life.
- Bring an advance directive or living will, if one exists. Read more about creating a living will.
In addition to consulting with doctors about the right decision for healthcare, it’s important for the patient to talk with family, loved ones, and caregivers about their options and wishes concerning end-of-life care.
What to expect
Typically, palliative care is carried out by a team of healthcare providers, often with special training. Once the decision is made to enter into palliative or hospice care, the patient and their family will meet with the team, led by a doctor. The team may include a nurse, social worker, physical therapist, pharmacist, other medical specialists, a clergy member, and emotional support/bereavement counselor.
The patient, family members, and care team, in collaboration with the primary care doctor, will discuss care options and create a plan based on the patient’s needs and priorities. The team’s purpose is to provide symptom management and offer support, advice, and guidance to help the patient make difficult decisions that could arise over the course of care. They may refer you to other specialists as well.
Myths about palliative and hospice care
“Despite its many benefits, many patients and physicians are scared of ‘palliative care’ because of its strong association with the end of life. Some have been compelled to change the title of their practices to ‘supportive care,’ ” writes Haider Warraich, a cardiologist at Duke University Medical Center and the author of Modern Death: How Medicine Changed the End of Life. “To many patients, the very name ‘palliative’ implies that they will be abandoned, making them very reluctant to accept their services. The fact is that palliative care can, and should, be delivered to patients with serious illness alongside conventional care.”
Studies show that people who receive palliative care in conjunction with curative treatment have better quality of life, fewer symptoms, and may live longer. The National Institutes of Health outlines some of the common myths surrounding palliative care, including the misconception that it’s only for patients at the end of life, and provides accurate information.
Hospice care is often misunderstood as well. Hospice is not a place, as is sometimes thought, but rather a philosophy of care. It’s also commonly thought that hospice care only serves the terminally ill patient, when it is designed to support the family too. The goal of hospice care is to help the patient live as fully and comfortably as possible in the time they have.
Choosing a palliative or hospice care provider
The patient’s primary care doctor or hospital case worker may recommend a provider they trust or work with on a regular basis, and with whom they have a longstanding relationship.
Some questions to consider when making this important decision:
- Is the provider nationally accredited?
- Is the provider Medicare-certified?
- Has the provider been cited for any violations, and if so, have they been corrected?
- Are the doctors and nurses certified in palliative care?
- How often will a nurse or other team member visit?
- Will care be available outside of normal business hours, if needed?
- How quickly can the provider create a care plan, and manage pain and other symptoms?
- If the patient is currently at home, are there options for inpatient care?
- What expenses should the patient anticipate having to cover?
Organizations that provide information on palliative and hospice care
- National Hospice and Palliative Care Organization
- Center to Advance Palliative Care
- Hospice Foundation of America
For help with making decisions about how you want to be cared for late in life, subscribe to our free online guide, Thinking Ahead: Putting Your Affairs in Order in 6 Weeks.