(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)
Making the decision to transition your loved one to hospice care (for people whose medical conditions mean they are expected to die within six months) is a time of emotional upheaval. It’s often accompanied by confusion, with little understanding of available options or how hospice actually works.
Knowing ahead of time which hospice services are available and the tasks you may be required to take on can help you make the right choices when decision time comes.
Home Hospice, Hospital-Based Care or Stand-Alone Facility
One of the first things you will need to decide is whether to use a home hospice service, hospital-based care or — if available — a stand-alone facility. Nursing homes may also have hospice units or hospice floors.
There are advantages and disadvantages to each, according to Gilbert Oakley, a hospice nurse with Visiting Nurse Service of New York, who’s been providing home hospice care for over a decade.
You’ll have to balance what the person who is dying wants versus what you and the family can realistically provide.
If opting for in-home hospice, a home hospice agency will work with you to determine whether an adequate support system exists. Can the family pitch in with necessary tasks — from administering pain medication to bathing to helping the person toilet? Are you financially prepared to pay for additional help beyond what insurance covers?
Medicare-reimbursed hospices (for people 65 and older) all provide the same basic services. However, there still may be differences between providers that might make one a better choice for you over another, according to the Hospice Foundation of America. The best way to know is to compare. Medicare’s Hospice Compare provides lists and ratings of hospice providers in your community.
Your loved one’s physician, hospital discharge planner or social worker can recommend specific hospice agencies or facilities. Geriatric care managers can also be a good resource. Often a physician has privileges at certain facilities, which may limit choices. Ask these experts questions about their experiences working with the agencies or facilities. Then contact a few for informational appointments.
Hospice Questions to Think About
Many of the questions are the same whether you opt for in-home hospice or facility care. Here are some important questions to consider:
Is the hospice Medicare certified? Most are, and are therefore required to follow Medicare rules and regulations. This is important if your loved one receives the Medicare home hospice benefit.
Is the hospice nationally accredited? This designation lets you know that the agency or facility meets certain quality standards. While accreditation isn’t required, it can be a clue to the agency’s commitment to quality.
Has the facility or agency been cited in a negative way in the last few years by a state or federal oversight agency? Find out whether any violations or deficiencies been corrected.
Are the hospice’s doctors and nurses certified in palliative care (providing relief from the symptoms and stress of a serious illness)? Experience counts for a lot, but having the credential indicates specialized study in palliative medicine and/or nursing.
How quickly is a plan of care developed for the individual? Some hospices can begin the admissions process and start hospice services within a few hours — even at night or on weekends. Others may only provide intake during normal business hours. Depending on your loved one’s situation, a hospice’s ability to start services quickly might be very important.
How often will a nurse visit my loved one? Medicare only requires one visit every 14 days, but your family member may need more support, according to Perry Farmer, CEO of Crossroads Hospice, a for-profit provider. Find out the answer to this: How often do social workers, care aides, clergy, volunteers or bereavement support counselors come?
What are the options for inpatient care? Patients being cared for at home at some point may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities vary — from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. If possible, visit the facilities (or delegate the task to a trusted family friend) to ensure that they are conveniently located and that you are comfortable with what they offer.
How rapid is crisis response? You want to know who would be available after normal business hours, on weekends and holidays. Ask about the hospice’s average response time and who will make the visit. Some hospices offer limited in-home support on nights and weekends, while others are able to send staff out to a patient’s home no matter when a crisis arises.
What are the expectations for the family’s role in caregiving? See whether the hospice’s expectations are consistent with what the family can provide. Often the care partner has no idea what it’s going to take to be with someone as they die at home — administering medication, helping with bathing and toileting and more. Will the hospice provide training to family caregivers?
How quickly can we expect pain and/or symptoms to be managed? Pain management is a key part of hospice care. Ask about the process if medications don’t seem to sufficiently address pain or symptoms, and how quickly they can be adjusted.
What out-of-pocket expenses should the family anticipate? Original Medicare’s hospice benefit covers everything needed related to the terminal illness, from doctor and nursing care to short term respite and grief counseling. This is true even if the individual chooses to also remain in a Medicare Advantage Plan or other Medicare health plan. There may be a small co-pay for some services like respite care. Medigap and Part D prescription drug plans pay for other care and certain medications.
Taking this all into a account, having a plan of care is vital, according to Oakley. The caretaker(s) need to be aware of what the hospice can or cannot provide and what you or other family members must do.
If your loved one is a veteran, it’s important to select a hospice with the necessary, appropriate experience. Next Avenue published a story detailing how the toll of war on veterans can complicate end-of-life care and present unique needs that must be addressed. You may want to check out the We Honor Veterans program which works with experienced providers of this type of care.
Oakley also recommends finding out how the hospice handles patient and family concerns. Is there a clear process for sharing issues with appropriate hospice staff and ensuring the concerns are addressed, including a process for escalation if the concern is not adequately resolved at lower levels?
Facility-Based Care or Hospice Houses
There are times when patients with very complex symptoms or conditions cannot be cared for at home. Sometimes family members are geographically distant or just don’t have the emotional or physical resources to deal with the situation on a day-to-day basis.
One alternative is a freestanding facility known as a hospice house. Hospice houses offer a more home-like atmosphere than typically found in a hospital or nursing home. They’re designed for short stays and may be a good option when the person requires around-the-clock care. Some hospice house programs mandate that a patient be within a month or two of death, so be sure to ask about admission criteria.
“If you have an opportunity to go with a free-standing hospice house, jump wholeheartedly into it because the environment is created specifically to help people as they die and the family members of people as they die,” said Dr. Rebecca Allen, a geropsychologist and professor of psychology at the University of Alabama’s Research Institute on Aging.
Allen recommends asking all hospices about available bereavement services. Grief support can vary widely. It may include individual counseling, support groups, educational materials and outreach letters. If you opt for individual or group support, find out what credentials the session leader has.
What’s Most Important
Think about your general impressions after the initial contact with the provider. What was your reaction to the people you spoke with?
Remember to focus on what is most important to your family — most importantly the person who is dying.
Keeping that at the center will help narrow the field, whether there are three options or 30.
New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, The Los Angeles Times and The Hartford Courant.