If you have been caring for a loved one with life-limiting illness who has chosen or been advised to stop treatment for that illness you may be considering hospice care as an alternative. Hospice provides physical, emotional and spiritual support for the patient and for family members as well and can help you through this challenging time.
In fact studies have shown that patients who receive hospice care at the end of life actually live longer than those who do not enroll in hospice. Hospice patients also experience greater quality of life and better symptom management than other patients with similar illnesses, particularly if hospice care begins earlier during the disease process.
If you are considering hospice care for your loved one here are 10 things you need to know before you choose which hospice to work with:
- Not all hospices are alike
Some hospices are Medicare-certified and must adhere to regulations and standards for the care they provide. Hospices that are not certified don’t have to comply with the same regulations as certified hospices and may offer fewer services. Ask if the hospice you are considering is certified and find out what services are available.
- Most hospice patients receive care where they live
Your loved one will most likely receive hospice care wherever she resides, either in a home or nursing facility. Most hospices in the U.S. do not have inpatient facilities but offer outpatient teams that travel to visit patients. Be sure to ask about the location of service provided by any hospice you are considering.
- Hospices do not provide 24/7 caregiving
One fact that surprises many families when they sign on with a hospice is that family members are responsible for providing round-the-clock care for their loved one. The members of the hospice staff will make weekly or more frequent visits as needed but the day-to-day care must be arranged by the family. Before you agree to work with a hospice consider whether or not your family can handle the necessary care or afford to hire professional caregivers.
- Medicare pays for respite stays in inpatient facilities
The Medicare benefits covers short stays in a hospital or inpatient facility if needed for symptom control for the patient or as a respite for family caregivers. Ask the hospice you are considering when and where they provide respite care so that you will know in advance how to access it if necessary.
- Hospice care utilizes a team approach
When you sign up for hospice you will most likely be visited by a number of different individuals who are part of your care team including a doctor or nurse practitioner, nurse, home health aide, chaplain, social worker, and volunteer. While it can seem overwhelming at first to meet so many new people, this team approach is one of the greatest benefits of hospice care. Each team member brings a different expertise to patient care and they work together to create a plan of care that meets the needs of the whole patient. You may see the nurse and home health aide more frequently than the other team members but all of them are working together to provide the best care for each patient.
- Volunteers play an important role in hospice care
Medicare certified hospices are required to utilize volunteers as a source of support to patients and families. Some hospices have volunteer programs that offer help with daily tasks around the home but some do not. If you need this type of assistance be sure to ask what specific volunteer services are available from the hospice you are considering and how frequently you will be able to access them.
- Medications, equipment and supplies are covered under hospice care
Hospices that are certified by Medicare must provide at no charge to the patient medications, equipment and supplies that are necessary for care of the terminal illness. Be sure to ask which medications will be covered under the hospice benefit and if any are not covered so that you will know in advance what you may have to pay for out-of-pocket.
- It is better to be admitted to hospice earlier rather than later
Under Medicare regulations hospice care can begin when it has been determined that the patient has 6 months or less to live, but many patients are not admitted until the last 1-2 weeks of life. This means that they have missed out on a great deal of care that could have been provided for several months in advance. The hospice team can provide patients and their families a wealth of education and support when they are able to develop a relationship over time. Many families find they are able to heal old resentments and find renewed closeness during the weeks and months they are receiving hospice care, which improves quality of life for the patient. But this is much more difficult when the hospice team has only a few days to manage care of the patient and offer their support to the family. Tell your healthcare provider you are interested in hospice for you or loved one and ask to be referred sooner rather than later.
- Your hospice will provide you with bereavement support
As part of the hospice benefit you will receive ongoing support for grief even after the death of your loved one. This may consist of support groups, a counseling visit, or ongoing letters you receive in the mail. Ask what type of grief support is available from the hospice you are considering and make sure it matches your needs.
- You are the most important member of the hospice team
When you sign on with hospice you will have access to a team of providers who will work with you to care for your loved one, but you will still be providing the bulk of the care. The hospice staff will be responsive to your calls and requests but they do have limitations. Some team members care for patients over a large geographic area and may have to group their visits together based on location, so you may have to fit your needs into the scheduling needs of the staff member. Some hospices are understaffed at times because the number of hospice patients varies and is unpredictable. Ask the hospice you are considering about their census and staffing ratio to determine if they will be able to provide the level of responsiveness that you prefer.Choosing a hospice team to work with your loved may be one of the most important decisions you will make so be sure to ask questions and learn all that you can about the variety of hospices available in your community. Get recommendations from friends, your care providers, and clergy members as a starting point. If you start your search early in the process you will have time to find the right fit rather than make a rushed decision in the midst of an emergency.These decisions regarding care at the end of life are much easier when you have had conversations in advance with your loved one, other family members, and all of the healthcare providers who are involved. It’s never too early to get informed about choices at the end of life and start having discussions about your wishes and those of your love ones.
Dr. Karen Wyatt is a hospice and family physician who writes extensively on spirituality and medicine, especially at the end-of-life. She is the author of “The Tao of Death” and the award-winning book “What Really Matters: 7 Lessons for Living from the Stories of the Dying”. She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com. Connect with Karen Wyatt at karenwyattmd.com, on Facebook and on Twitter .