Look at any definition of palliative care- The Center to Advance Palliative Care (CAPC), The National Institute on Aging (NIA), The World Health Organization (WHO) or The State of South Dakota, you will find references to improving the quality of life not only for people with serious illness but also for their care partners and families. Why is that? Care partners play a crucial role in the lives of those they support, sometimes at their own expense.
“In the United States, more than 40 million adults provide palliative care for family members. They often find themselves stretched thin as they try to balance caregiving with personal, work and family needs, as well as navigating the medical system. The duties of [care partners] may include transportation, bill paying, dressing, bathing and other activities of daily living, in addition to medical assistance such as medication administration.”1
Caregiving can take a physical, emotional and financial toll on the care partner due to lack of sleep, grief, witnessing suffering, lost hours at work or even loss of a job. “Caregiving has all the features of a chronic stress experience and is used as a model for studying the health effects of chronic stress.”2
Palliative care teams can help care partners in their role by making them a part of the team. When patients and care partners attend an appointment and participate in shared decision making, the palliative care team can update them with the latest information on their patient’s illness and review goals and treatment options. It’s also an opportunity for the interdisciplinary team members to assess the care partners’ needs including caregiver training.
Addressing the stresses care partners experience is also a role for the interdisciplinary palliative care team members. This may include linking them to counselors or support groups to address the emotional challenges they face. It may also include finding resources for extra help in the home or respite care and encouraging a care partner to tend to their own wellbeing. As anyone who travels by air has heard “put your own oxygen mask on before assisting someone else.”