November is National Hospice Awareness Month—an opportunity to learn more about this often misunderstood but important service and support.
The recent announcement by former U.S. President Jimmy Carter’s family that he’s entered hospice care has helped familiarize many of us with hospice care and a better understanding of the benefits that hospice can offer.
Understanding end-of-life care options can be essential to making informed decisions.
What is hospice care?
Hospice care is generally intended to focus on relieving pain and symptoms in patients who most likely have six months or less to live (American Medical Association). It is also normal for people to be on hospice services longer than six months.
Hospice care is a wholistic approach, attending to a patient’s physical, as well as emotional, social, and spiritual needs at the end of life. Comfort and quality of life are prioritized. Hospice benefits the patient as well as family caregivers and family members.
Hospice provides an alternative to treatments focused on life-prolonging approaches that may be onerous, likely to cause more symptoms, or are not aligned with a person’s goals of quality of life at the end of life.
This may be why former President Carter chose hospice. After a series of health crises in recent years, including a bout with melanoma (a skin cancer) that spread to his liver and brain, causing repeated falls, Mr. Carter opted to enter hospice care at home earlier this year.
The goal of hospice care is to provide quality of life through pain and symptom management at the end of life.
How do you know when hospice care is the right choice?
Whether you are considering hospice care for yourself or someone in your care, a diagnosis of a life-limiting illness or condition will likely prompt consideration of hospice care at some point.
Hospice care may be recommended when:
- Life-extending treatments are available, but the patient or their advocate may see the side effects of treatment as worse than the condition itself.
- A cure for the disease is not available or treatments are no longer effective.
- There’s a desire to keep the person at home instead of transferring to a hospital or nursing home.
Hospice is not a place, though some senior living and long-term care communities and hospitals offer hospice programs and centers.
What should you expect from hospice care?
The hospice care staff support and educate family and professional caregivers on the best ways to care for someone at the end of life. It’s important to know that hospice services do not provide families with ongoing caregivers for hands-on care.
Physical care. Managing symptoms such as pain and suffering is the priority. The care is not focused on cure but comfort. A nurse will visit once a week initially and will increase the frequency as the patient is closer to the end of life.
Nursing visits ensure that a patient is comfortable, and pain is well managed. Nurses provide medical assessments, care education, and coordination with the care team and medical staff. Nurses are available 24/7 to ensure a patient has the appropriate level of comfort and families are supported if symptoms arise that need to be addressed at any time, day or night.
Hospice will also provide a bath aid to help family members bathe their loved ones.
Emotional, social, and spiritual support. Hospice provides needed emotional support for the patient through a social worker and pastoral services to help families experience grace and dignity in the final stages of life. Social workers will educate and counsel family members about emotions that arise at the end of life.
Social Workers encourage families to find ways to increase quality of life for patients and families at the end of life. This might include reminiscing, story sharing and legacy plans, making time for final conversations, moments of joy, laughter, and expressing gratitude. It may also include scenic drives, a visit to a favorite beach, a meal from a favorite restaurant, or a wine toast with closest friends. Others love to have music playing, enjoy aromatherapy, or a gentle massage.
Arrangements can be made for the patient, family, or friends around spiritual support. Whatever brings them comfort, meaning, and peace is most important.
Wondering if hospice is the right choice?
Choosing hospice can be difficult, especially at a stressful time. Some of the professionals who are available to help include:
- Talk with your health care provider, or the provider of the person in your care. They can help you evaluate options, make referrals, and answer your immediate questions.
- Contact Community Living Connections for free, confidential assistance. Call toll-free at 844-348-5464.
- Check your local community or senior center. Many have social workers on staff who are familiar with hospice care and can help answer questions and make referrals.
- An Aging Life Care Professional (aka geriatric care manager) can help you navigate the options as well as the emotions of decision making. They are also adept at advocating, as well helping guide care, support, and options.
Contributor Wendy Nathan, BSc, CMC is a Certified Care Manager with Aging Wisdom, an Aging Life Care practice with offices in Seattle and Bellevue. Wendy also facilitates a family support group for the Alzheimer’s Association Washington State Chapter.