Week in DC: The role of hospice and palliative care

Wonjae LeeHealth care cost in the US is increasing in overwhelming pace, aging population being the major factor. The population over the age of 65 is already over 12% and is reaching 15% by 2015. In fact, the fastest growing demographic is people with 100 years and above, and the second 85 years and above.  However, the current health care system is neither suitable nor ready for the aging society. Medicare, the system designed for the elderly, is weak for chronic disease and long-term care which are mainstay of care for the aging society. Our guest speaker from Capital Caring asserts that this is critical moment when change in the system is necessary, and provides palliative care as one solution.

Cost of care in advancing disease is a huge burden to family members. It is not just cost itself that needs to be paid to hospitals and long-term care (LTC) facilities, but ‘informal caregiving’, off-the-books health care by our families which comprise $200 billion per year, is the real problem that is often overlooked. Informal caregivers sacrifice their career because of large reduction in work hours and interrupted work history. More importantly, many informal caregivers experience morbidity during and after caregiving. In year 2000, 330,000 families identified illness/injury as the primary reason for bankruptcy. As pointed to by our guest speaker, this big gap which is filled by informal caregivers should be addressed by the institution, preferably by empowering palliative care.

Palliative care aims for total care – body, mind, and spirit –  of patients. Table 1 shows the framework of integrated palliative care. Palliative care provides treatments to relieve suffering and improve quality of life while saving cost of care. Hospice care which is considered as a gold standard increased dramatically reaching 1.5 million people in 2012. Nevertheless, the number one feedback is “if only I’d know about hospice care earlier,” which indicates that there are substantial unmet needs and a huge business opportunity. Capital Caring’s  expert  raised concerns regarding limited medical professionals who can provide right care, physician resistance, and the culture of traditional medicine.

Table 1. Framework: Integrated Palliative Care

Image from Wonjae's Blog Post Jan 2014

Adapted from the Work of the Canadian Palliative Care Association and Frank Ferris, MD.

To overcome obstacles and deliver palliative care, I suggest three steps.  First, we should have serious conversation on what is really important to patients: life-prolonging treatment in ICU apart from family or thoughtful care that comforts patients and keeps their dignity. Second, not only the medical system but also the legal structure to support the decisions made for palliative care. Palliative care and especially hospice care that may lead to shorter life-span would always be potential target for law-suit. We should make environment where rational decisions are not hindered by external factors. Most importantly, doctors, nurses, and patients and their family should sit down and talk. Talking about life and death is not an easy task. However, that is why they need to spend more time and communicate more than ever. By doing so, they can draw mutual understanding that benefits all.

Aging society is a huge challenge. To lessen the burden of families and to provide the best care while preserving the dignity, our expert suggest that we need to take actions; capture information and data, go to the Hill, talk to legislature. In addition, I think we open the conversation now.

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