Frame of reference
As an OT working in hospice, I have the privilege of thinking about death in a different way. In school, brief clinical assignments at some of the best hospitals in the world imprinted the fact that excessive intervention in highly complicated cases is expensive, physically and emotionally painful, and very frequently unsuccessful. People die, no matter what.
Hospice is an altogether different model. Although every hospice is different, they are typically nurse-driven organizations that utilize physicians, social workers, nurses and aides to provide care for those with less than six months to live. Some people on hospice live for years; some people live for hours.
The hospice mission is to provide care for the dying that maximizes the quality of life and minimizes pain. So where does OT fit in?
Occupational therapy and hospice
Just like any other person within the life cycle, a dying person has occupational deficits. Maintaining independence to maximize quality of life can dramatically change a person’s experience. A simple adaptive utensil can allow a person to feed themselves for an additional month or two. A trapeze can allow someone to bridge in bed during care. Brake extenders can help a person be independent in their home while minimizing falls. A one-hour assessment with recommendations for appropriate adaptive equipment (and subsequent training, if needed) can really be a game-changer.
And lest we forget, falls are prevalent, dangerous, and costly. Environmental assessments are huge in the hospice world. Research shows that occupational therapists are the most qualified and effective professionals to perform an environmental assessment for fall prevention (Gillespie et al, 2012). In many cases, an OT can evaluate the environment of a patient who is a high fall risk, especially a live-alone patient, as a preventative measure. Cluttered floors? Gone. Unsecured rugs? Bye. Need a grab bar? I got you.
There is also plenty of space to work in concert with the staff PT for transfer training and strengthening to maintain or delay decline.
But one of my favorite areas of practice within hospice is pain relief. I am trained in several types of manual therapy techniques, but even simple range of motion can be helpful in minimizing spasticity, improving ability, and reducing pain - perhaps the primary driving force behind all hospice teams. Medication is often understood to be the answer for all pain in hospice settings, but as we all know, physical manipulation can be significantly more cost-effective as well as improve outcomes. To me, it is one of the more beautiful and humbling experiences to alleviate a person in the pain of the dying process.
“The OT scope is fabulously broad, and a hospice setting is no exception. So don’t be quiet about educating your colleagues about the many benefits of occupational therapy and your specific skill set!”
OT is not covered by Medicare in a hospice reimbursement. Many hospice agencies hire OTs and PTs from home health agencies to drop in as needed, but increasingly rehabilitation staff are hired as part-time employees that are expected to embody hospice philosophy. Ironically, rehab staff are not participating in a patient’s care with the intent of rehabilitation; rather, the intent is to serve the patient where they are and maximize quality of life.
I have the privilege of providing pain relief to many patients, but there is one experience that stands out. Tess (not her real name) was in her early fifties and dying of cancer. I treated her for several weeks and noted an active decline, but her team of clinical providers, as well as a support network of friends, reported that my treatments were one of the more effective interventions in easing her pain.
For Tess specifically, I chose to use craniosacral techniques, which use a very light touch and are great for patients who are centrally sensitized to pain. My goal was simply to promote her parasympathetic response and achieve a sense of calm so that her body could release.
Tess invited me to be a part of her care team during her active dying process - the last few hours or days before a person dies. This is pretty unusual for my work, but it was an honor to be present with her during that time. Being with Tess for those few hours reinforced that the greatest strength of a hospice provider is simply to be present with a person in one of their most vulnerable moments.
This is true both in tender moments, like with Tess, but also in much more mundane scenarios, too. The OT scope is fabulously broad, and a hospice setting is no exception. Because we are underutilized in this setting, it’s critical to educate colleagues about the many benefits of occupational therapy and your specific skill set.
When I first arrive at a new patient’s home, I sit down, look them or their caregiver in the eye, and say, “How can I be of service?” I feel lucky to be able to have the freedom to ask this question and truly follow a patient-centered care model.
So what exactly do you say to your dying patient? It depends. But as an OT have unique value to offer, so don’t be afraid to jump in and connect.
Gillespie, L. D., Robertson, M. C., Gillespie, W. J., Sherrington, W. J., Gates, S., Clemson, L., & Lamb, S. E. (2012). Interventions for preventing falls in older people living in the community. Cochrane Database Systems Review, September 12 (9).