OT in Hospices
The Role of Occupational Therapy in Palliative Care
Bringing Quality Care to the End of Life
In 1999, nearly 2.4 million Americans died. Of that number, more than 600,000–roughly
29 percent–died in hospice care, spending their last days with dignity, surrounded by loved ones in comfortable and compassionate environments.
The hospice movement has been gaining momentum over the past several decades in America. Built on a model of patient- and family-centered care, hospice brings comfort and dignity to patients with life-limiting conditions who no longer respond to cure-oriented medical care. The philosophy of palliative care centers on pain and symptom relief, rather than on aggressive treatment of the disease.
Hospice teams, on call around the clock, generally consist of physicians, nurses and nurse assistants, home health aides, social workers, volunteers, spiritual leaders and, often, rehab therapists. Although the team members rarely visit at the same time, frequent team meetings keep everyone up to date on patient condition. Family members usually serve as the primary caregivers, and the teams offer support through medical intervention, training, counseling and support in carrying out the patients' wishes and maximizing their comfort.
In most cases, patients enter hospice care when their primary care physicians certify that they have terminal illnesses with life expectancies of six months or less. Patients who choose hospice care for their remaining days most frequently receive treatment in their homes, but hospice services also are available in freestanding hospice facilities, hospitals, nursing homes and other long-term care facilities.
In care that is aimed at symptom relief rather than "getting better," where does occupational therapy fit in? Hospice patients and their families have often asked that question of Suzanne M. Trump, MDiv, OTR/L, who worked in hospice for nearly eight years.
"Our focus is still on quality of life and maintainingand in some cases improvingfunction," explained Trump, director of academic advising and an instructor in the department of occupational therapy at the University of the Sciences in Philadelphia. She gives as an example a patient who was undergoing chemotherapy before transferring into hospice. That patient may be very de-conditioned, and OT can help him regain some strength and function. But the therapist must be aware that any gains will level off, and eventually the patient's condition will decline.
"What is different in hospice is that we are trying to help the patient and their family or friends to form a team," she said. "As the patient's functional status decreases, they can become interdependent, helping each other out and learning ways that the family members can still incorporate the patient into their normal activities."
A woman in hospice care may no longer be able to prepare meals for her family, one of her favorite roles. The OT can work with her caregivers and show them how to keep her involved by engaging her in other aspects of the activity, such as meal planning or teaching a favorite recipe. Creating this interdependence shows the patient that there is more for her to do in her last days than just lie in bed. She can still be an active member of the household.
Making the Transition
An OT working in hospice "needs a thorough understanding of death and dying and a degree of comfort with (it)," Trump added. "These are the last moments, the last days of someone's life. By helping them to maintain their roles we are actually having a si"nificant impact on quality of lifeallowing them to have a meaningful preparation for death. I think that is a phenomenal opportunity for anybody."
Trump said the most stressful part of the job for her was the intensity of the relationship she developed with the patients and their loved ones. That relationship is often much deeper than traditional patient-therapist bonds, because you are working in patients' homes and are a part of their last moments.
Most hospices offer support services for the team members to cope with that stress. Most also follow up with the families for several months after patients' deaths, and offer yearly memorial services. This is a way for the caregivers to keep in touch and helps to ease the stress on both the teams and the families.
Trump moved to hospice care after eight years in home health, and so found the transition a little easier. "Any time you are in home-based care, you find you are a jack of many trades. You have to know a little bit about everything. For example, I learned a lot about the drugs that they use, especially pain meds and meds for nausea, because families would ask questions about that. And
since my background is also in chaplaincy, it was natural to incorporate that when appropriate."
Another difference that a therapist new to hospice must learn is the billing system. Medicare, Medicaid in a majority of states, and most private insurers offer hospice coverage. The Medicare hospice benefit falls under Part A Medicare and works on a per-diem basis. The hospice agency receives a per-diem amount for each day that the patient receives hospice care. That capped amount must cover the costs of all caregiver services as well as additional services, adaptive equipment and medications.
For OTs interested in hospice care, Trump recommends doing a little homework before you start. "I would encourage the OT to learn as much as they could, to develop their (understanding) of death and dying and then to begin to make contacts and offer their services," said Trump. "I would caution them that because [the role of OT in hospice] is not widely understood, they really need to do some marketing first. There isn't a lot of research out there in terms of outcomes that says that putting an OT in has a better outcome. But I think OT in hospice is grossly underutilized."
A good way to get a foot in the door may be to start out as a hospice volunteer. Volunteers are integral parts of the hospice team, providing a break for family caregivers and giving patients an additional source of support. In some cases volunteers help to carry out goals of the care plans. Trump once had a patient who loved woodworking. She evaluated his abilities and the safety issues involved for him to be able to participate, then educated a volunteer who helped carry out the program. Most hospices offer volunteer training in the issues specific to this kind of environment. Such an opportunity can help you decide if hospice is for you, and can help show the hospice how valuable your services can be.
Another option may be to provide support services to the hospice team rather than be directly involved with patient care. OT training in group sessions and in stress management/wellness promotion would make an OT suited to this type of role.
If you are interested, Trump definitely recommends pursuing hospice work. "I have learned more about life by working with people in hospice than I probably ever would have learned on my own just going through life," said Trump, who is currently teaching and researching in this area and hopes to return to direct care soon. "It is just a gift for a health care professional to be a part of the end of someone's life."
For more information or to locate a hospice in your area, contact any of
the following organizations: The National Hospice and Palliative Care Organization,
www.nhpco.org or (703) 837-1500; The
American Hospice Foundation, www.americanhospice.org
or (202) 223-0204; The Hospice Foundation of America, www.hospicefoundation.org
or 800-854-3402; or Children's Hospice International, www.chionline.org
Jill Diffendal is ADVANCE associate editor.