New: Role of An End of LIfe Care Advocate

By on October 25, 2013
people discussing at the office

There is a growing trend in health care- the need for an end of life advocate, as known as the health care fiduciary.  As the trend for Death Cafe’s grows, and the population is aging, so does the need for the end of life care advocate. Each year in the United States, people who do not have decision-making ability because of acute or persistent cognitive problems are in scenarios in which vital medical choices have to be made for them.

Studies show tens of thousands of these people have no known household members or designated surrogates to  offer  assistance or advocate for those difficult decisions. Research has found that such individuals constitute 16 % of patients in intensive care systems, 3 % of  those living in a nursing  setting, and a huge,  but unspecified number of seniors, living in a range of different settings, who are facing end-of-life choices. Several approaches are currently used to help in clinical decision-making at the end of life for those without families or designated advocates including: healthcare facility ethics committees, court-appointed advocate representatives, dependence on advance directives, if they are readily available. Some systems even make use of  of computer-based choice systems.

Most patients and families do not plan for end of life events. These strategies all have constraints and typically lead to individuals getting care that would not have been their preference. The reality is, health care professionals do not communicate regarding vital issues about end of life and rarely do patients hear the precious words, “we do not have to treat the disease; we can just offer palliative care and keep you comfortable.”   It is more common that even with a terminal condition, patients are not aware or have an understand what is going on in their disease process.  Most patients fall into pain, fear, and isolation. Many die in hospitals or nursing homes, on machines, with no and must endure resuscitation efforts. Quality of life at the end of life is not a guarantee and perhaps not even likely, with even the best of intentions .

Furthermore, due to the fact that clinical care teams should battle with uncertainty about finest strategies of advanced care to prolong life,  the length of stay in a medical facility for people without family members or advocates are longer, leading to greater health care costs and possibly more-aggressive medical and surgical interventions than people with family members representing their wishes. This has led to the development of a new kind of health care professional: the health care fiduciary ,to help those individuals that need a decision maker and advocate when they are no longer able to make decisions for themselves.

Research shows that with the aging population comes many without children or family members that live miles away in a different state. Many of these individuals have friends that are the same age and many have illnesses that may not allow them to be around when the time comes for the need of an advocate.  Some aging individuals prefer not to bother their family or friends with these difficult decisions. In an article in the Journal of American Geriatrics Society, Elena Berman Ph D, Barry D. Weiss MD, Carol L. Howe MD, MLS and  Robert B. Fleming JD proposed a new kind of health care expert: the health care fiduciary or end of life care advocate. An end of life care advocate, could be social workers, registered nurses, a clergy member or even a paralegal. These would have to  be individuals that are able to navigate the health care system and feel comfortable discussing health and end of life issues.

 

The co-authors of the article envisioned the end of life advocate going through up to a year’s training (those currently well-informed about clinical matters and end-of-life choices would most likely require far less), followed by certification in specific states. The end of life care advocate or health care fiduciary would need excellent communication abilities, so they could guide individuals as they prepared their advance directives. The process would include the end of life advocate, meeting with doctors, reviewing medical records to get a complete understanding of  a client’s prognosis and choices that would be available to them. The position also entails have a clear understanding of  their clients desires regarding end of life issues as well as what measures the client does not want.

The end of life care advocate must be able to do this without pushing their own views or agenda on their client. The heath care fiduciaries, or end of life client, would probably work out of elder law companies or geriatric care management organization,as many clients want to and should plan for end of life issues early in life. Planning early would allow a person to maintain a relationship with the end of life care advocate. This promotes continuity and trust over time.

The cost for an end of life advocate’s services may vary state to state. The co authors of the article  estimate  that the end of life care advocate may charge $100 an hour. This is much less than a lawyer and even most geriatric care managers. The end of life care advocate may spend, 20 hours at first, to understand and record a clients desires. They would also need to  consult with healthcare providers. Over time, there will updates and conversations every few years to check on a clients health status as well as update the wishes and desires of the client.end of life care advocate Over all, the co authors figure  the tab may be about $3,000. This may occur over several decades. With inflation, or in cases of dementia, it may run considerably higher.

“Still, “compared to Terri Schiavo, the expense is minimal,” stated Dr. Berman, conjuring up the case of the comatose young Florida woman whose court case has actually probably caused more advance directives than other event.” Payment for an end of life advocate or health care fiduciary at the present time is private pay.Many are very wiling to pay the fees for peace of mind as they face aging and illness. Many with family members are utilizing these services because they do not want to share information or just do not want to burden their family members.

Over time, it is hoped that Medicare and Medicaid and private insurance providers would see the benefit the end of life advocate services as they prevent unwanted and unnecessary therapies. It would be financially beneficial for insurance companies to pay the fees of the end of life advocate as it would  assist in considerable savings and promote regulation of  the end of life care advocates practice. Research shows that despite a public movement to get people to assist in discussing end of life issues and developing advanced directives, the majority of the population does not take the steps to put these things in place. For many that care for an aging family member, hiring an end of life care advocate could be a benefit.

This would allow a family or client to sit and discuss the difficult issues, while offering support and comfort. An end of life care advocate, knows how to navigate the health care system , becomes familiar with the client and their wishes and assists the client to make the decisions that are  right for them. This gives many peace of mind and confidence that their end of life wishes will be honored. It gives the client the ability to remain in control of their life to the very end.

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