How is hospice different from palliative care?
Palliative care is about symptom relief for those with serious or chronic illness, primarily by coordinating across multiple specialties and with an emphasis on aligning treatment with the patients’ goals. Palliative care makes common sense for all of us, and its coverage through Medicare includes wheelchairs, oxygen, and physical therapy. If your parent is on palliative care, this will not reduce their treatment options. If they are on hospice, it will change which treatments are covered by Medicare and other insurance. They cannot be pursuing lifesaving treatments and hospice at the same time. Hospice is the form of palliative care specifically for those with less than six months of life expectancy.
Who gets palliative care?
The most common illnesses leading to palliative care are cancer, heart disease, stroke, diabetes, renal disease, Alzheimer’s disease, and Parkinson’s disease. It is not necessary to have one of these diagnoses to get palliative care. Any serious or life-limiting illness that is causing physical or emotional pain can qualify.
How do you get palliative care?
You or your parents can request palliative care through their primary care doctor or a hospital. You can seek out a doctor certified in Hospice and Palliative Care. They will typically work with a team of social workers, nurses, and clergy to address the breadth of your parents’ physical, emotional, and spiritual needs.
Hospice
Hospice is about transitioning from fighting to align more with the palliative care goals of quality of life and peaceful transition. It is for people who are expected to live fewer than six months, and it brings in resources to help your parents and your family with the quality of the experience.
Hospice typically means discontinuing aggressive treatments that are trying to cure a disease. In fact, Medicare states that a person can either receive cure-based treatments or hospice care but not both. Hospice may be exited if things change, including your parents’ preferences. If they wish to go to an emergency room or get other lifesaving treatments, those will not be covered while they are in hospice.
Starting hospice typically means leaving a high-stress environment like a hospital or rehab facility and moving back home. If your parents are no longer living at home, hospice may occur back in assisted living or another designated space. Some hospices have their own buildings that can welcome residents to have a calmer end-of-life than they would in a more medical setting.
Although the qualifying criteria for hospice is an expected life of less than six months, medical staff have historically referred with much less time than that. 20% of patients entered into hospice pass away within four days.
What changes when your parent starts hospice?
When your parent starts hospice, they’ll have the option to choose their “Attending of Record.” This is their opportunity to keep their Primary Care Provider or another doctor who has been treating them in the past, or to switch to someone new. The hospice company will have a doctor who oversees their care, but it’s their daily care will be overseen by a nurse. The frequency of their visits from that nurse will depend on your parent’s needs. It may be as often as daily or as infrequently as every two weeks. They will likely not be visited by the doctor who works with that nurse.
While hospice offers some new services, it does not include what you might think of as caregiving.
Hospice levels
There are four levels of hospice care, and your parent may shift between them.
- Routine Level of Care - hospice companies are paid approximately $200 per patient per day for their medical care, including medications and supplies, independent of how much care they need. This care is provided at home or in another non-hospital facility. If your parent doesn’t have a home that can keep them, they may need to stay in another facility for which they’ll have to pay room and board.
- General Inpatient (GIP)
- Respite - in-patient care for up to five consecutive days to relieve caregivers
- Continuous at-home care
Grief and the final days
When your parent starts hospice, you may feel anticipatory grief. Grief is a natural response to loss, and it looks different for everyone — sadness, numbness, anger, guilt, and physical tiredness are all normal. You may want to spend every last moment with your parent, straining your home life, or you may want to move on quickly to living without them. Try to find a balance between those two things.
Once you have your parents’ physical care lined up, your primary role in their final season is to communicate what you know about their wishes. It can be tempting to feel that the hospice period is either too long or too short, that your parent is too sedated or not comforted enough. Medical providers and hospice workers don’t always predict right, or in line with your parents’ preferences. But even with that uncertainty, the milestone of transition to hospice is a useful one to help you and your parents focus on final time together.
Check with the hospice workers when you have questions or assumptions, and to make sure your parents’ priorities remain honored. Hospice workers are typically part of a large agency that can connect you with additional resources. Hospice care can include support for you during your parents’ treatment and grief counseling for up to 13 months after your parent dies.
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Next step
Prepare for a supportive-care conversation.