end of life care

What Is Hospice?

Author/s: 
Vanessa Wagner, Adam Marks

Hospice is a specialized model of medical care for people with terminal illness.

The goal of hospice is to provide compassionate care to maximize a person’s comfort and quality of life during the natural dying process. Hospice care teams are composed of doctors, nurses, social workers, chaplains, and other individuals who work together to address the physical, emotional, social, and spiritual needs of people with a terminal illness and to support their families. This generally includes alleviating symptoms (such as pain, shortness of breath, or anxiety), establishing a comfortable and peaceful environment, and facilitating meaningful time with loved ones.

A GUIDE to help patients and families better understand serious illnesses: Mnemonic device provides way to teach learners about advance care planning

Author/s: 
Helen James, Warren Harris Lewin

Advance care planning (ACP) was identified as a priority in the 2006 final report of the Public Information and Awareness Working Group of the Canadian Strategy on Palliative and End-of-Life Care.1 An important component of ACP is patients’ understanding of their prognoses, which might include expectations related to future function, symptoms, and life expectancy.2-4 Without realistic prognostic information, patients are at risk of not engaging in ACP that would otherwise help them gain control over their illnesses, reduce anxiety, and avoid unwanted treatments.2,3,5 Moreover, lack of that information might lead to challenging downstream goals-of-care conversations. In guidance published in 2023 regarding a physician’s duty to discuss a patient’s medical condition and prognosis during a goals-of-care discussion when the physician deems cardiopulmonary resuscitation not to be indicated, the College of Physicians and Surgeons of Ontario highlighted the importance of physicians being able to communicate prognoses skillfully.6

Five Wishes Document

Aging with Dignity was founded in 1996 as a private, nonprofit organization with a mission to safeguard and affirm the human dignity of every person who faces the challenges and opportunities of aging or serious illness. Based on our founder’s experiences working in Mother Teresa’s homes for the dying, we wanted to ensure that every person facing the end of life is given the opportunity to talk about what matters most, and to ensure their wishes are known. With the help of the American Bar Association and end-of-life experts, and with support from The Robert Wood Johnson Foundation, in 1998 we developed the Five Wishes advance directive document. The document was designed to be accessible, legal, and easy-to-understand with the goal of helping people discuss and document their wishes in a non-threatening, life-affirming way.

Written in user-friendly lay language, Five Wishes was the first advance directive to address personal, emotional, and spiritual issues in addition to meeting medical and legal criteria. Because the document is based on what is important to people, it has been widely embraced by families, community groups, faith communities, and medical and legal providers.

Today, Five Wishes is the most trusted resource for people who want to plan for care in advance of a health crisis. The Five Wishes advance directive document has been distributed by over 40,000 organizations and has reached over 30 million individuals, and Five Wishes has grown into a comprehensive program with robust tools for healthcare providers, businesses, communities, as well as individuals and families.

We are continuing to grow and find new ways to ensure that every person is given the opportunity to have meaningful, compassionate conversations about what matters most so that however a person arrives at the end of life – whether through accident or illness - their wishes are known and documented, and their families are well-prepared and supported in making end-of-life decisions.

Improving the Adoption of Advance Directives in Primary Care Practices

Author/s: 
Wickersham, Elizabeth, Gowin, Mary, Deen, Munim H., Nagykaldi, Zsolt

Background: Oklahoma's Advance Directive completion rate is less than 10%. We compared the implementation performance of 2 advance directive forms to determine which form could be more successfully disseminated.

Methods: The implementation of the Oklahoma Advance Directive (OKAD) and the Five Wishes form were compared in an 8-month pair-matched cluster randomized study in 6 primary care practices. The outcomes measured during the 22-week implementation included form offering rate, acceptance/completion rate by patients, and documentation in the chart. Twenty semistructured interviews with patients and clinicians were conducted to assess intervention experience.

Results: A total of 2748 patient encounters were evaluated. OKAD was offered in 33% of eligible patient visits (493/1494) and accepted 54% of the time (266/493). Five Wishes was offered in 36% of eligible patient visits (450/1254) and accepted 82% of the time (369/450). Unadjusted analyses found no significant difference in offering of advance directive forms between groups. However, the odds of accepting Five Wishes were 3.89 times that of OKAD (95% CI, 2.88 to 5.24; P < .0001). Logistic regression models controlling for several confounders indicated that the acceptance of Five Wishes was favored significantly over OKAD (OR = 1.52; 95% CI, 1.27 to 1.81; P < .0001). Qualitative analyses indicated a clear clinician and patient preference for Five Wishes.

Conclusions: Results suggest that Five Wishes was more readable, understandable, appealing, and usable. It seemed to capture patient preferences for end-of-life care more effectively and it more readily facilitated patient-clinician conversations.

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