Karen J. Ayers, ACNP
With concern, you have just sent your patient home from the oncology clinic where you work. She’s just heard the results of her latest imaging studies and learned that her cancer has progressed, despite the efforts with first-line agents. You’ve seen her lose weight, slow down, and have trouble thinking and remembering things. You’re not sure how much support she has at home. You know that she’s been scheduled to start the second-line treatment soon. This is really taking a toll on her.
You think that a referral to palliative care is needed. But there are a couple of obstacles: first, you’re not sure how to explain what palliative care is, and second, the palliative care clinic is an hour’s drive away from where the patient lives, and the wait to get in to the clinic is 6 weeks.
This scenario is all too common. Unfortunately, the demand for palliative care is high, and the capacity to provide it is low. As we know, our population is growing older faster. It is estimated that by 2030, more than 20% percent of US residents are projected to be aged 65 and older, compared with 13% percent in 2010 and 9.8% in 1970.1
As for workforce capacity, in California for example, a 2012 report estimated that of the approximately 100,000 physicians a little more than 900 were certified in palliative care (0.9%), and of the 262,000 nurses, 3800 worked in palliative care and just 789 of those had a certification in the field (0.3%).2
Palliative care is specialized medical care for people with serious illness, whatever the diagnosis and whether or not they are undergoing curative treatment. Its goal is to improve quality of life for both the person and the family, on their terms. It is delivered by a team of professionals who focus on the bio-psycho-socio-spiritual needs of the person and family as they offer support and guidance through often difficult times. Palliative care is provided along the continuum from diagnosis to death, starting upstream of hospice care, and it is based on need, not prognosis.2 (Figure.)
Recognizing the potential benefit of palliative care for so many of our patients, but its limited availability, new questions arise.
How do we deliver more palliative care with available resources?
How do we expand the resource pool of palliative care?
Nursing’s emphasis on the bio-psycho-social-spiritual wellbeing of people positions it perfectly to bridge the capacity gap in palliative care. Accordingly you will find nurses prepared at all levels as members of nearly all palliative care teams.
Extending Patient Access
Palliative care teams made their debut in acute care hospitals and more recently have extended into the outpatient setting. The usual arrangement is a clinic where the patient comes in for an appointment. Given that palliative care’s population is by definition burdened by serious illness, getting to a clinic—or making it to yet another appointment—can be very difficult and distressing. Many patients live far from a palliative care clinic or essentially have none available in their vicinity.
A recent California HealthCare Foundation publication about community-based palliative care includes a section on innovative models in palliative care.3
These models strive to improve the support and monitoring of patients and caregivers as well as to improve communication between patients and providers and among family members. They use a variety of technologies including remote monitoring devices, telephone, videoteleconferencing (VTC), and mobile devices. They have had many successes and also noted various challenges. Palliative care is a time- and detail-intensive service, no matter how it is delivered.