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Patient Advocacy and End of Life Issues

elderly patient in hospital

Sally Abrahms at AARP is one of our favorite bloggers. She covers eldercare issues on her blog, often highlighting interesting programs and news related to aging and caregiving. Sally recently shared a post about a new study on end of life issues. Some of the big findings of this end-of-life views survey include:

  • 66 percent of respondents think a patient should be allowed to stop treatment and die under some circumstances.
  • 31 percent disagree, saying health professionals should do everything possible to save a patient’s life.
  • The “do everything” group has increased 9 percent since 2005 and 16 percent since 1990.

The group was fairly evenly divided on physician assisted suicide, with 47 percent in favor and 49 percent disapproving of laws to allow a doctor to prescribe lethal drugs to a terminally ill patient. The survey goes in to a lot of depth on various related topics, and shows the wider divides on these issues when respondents are broken down by ethnicity and religion.

Respondents also have different opinions when looking at what they would want personally, with preferences varying by hypothetical circumstances. The study shows for example, “57% say they would tell their doctors to stop treatment if they had a disease with no hope of improvement and were suffering a great deal of pain. And about half (52%) say they would ask their doctors to stop treatment if they had an incurable disease and were totally dependent on someone else for their care. But about a third of adults (35%) say they would tell their doctors to do everything possible to keep them alive – even in dire circumstances, such as having a disease with no hope of improvement and experiencing a great deal of pain.” The latter percentage has gone up, partly because more people elected to express an opinion on the issue (versus being undecided). At the same time, there’s a growing percentage that say people have a moral right to suicide (particularly when in a great deal of pain with no hope of improvement).

Obviously, these issues are very personal and potentially polarizing. A person’s background can have a big effect on his/her views on this issue, but the decisions are also greatly dependent on the circumstances. Perhaps the uptick in responses also shows that more people have thought about these issues and formed an opinion than in the past. This may be due to increased discussions, awareness and exposure (particularly as more people serve as caregivers, they see these issues played out with loved ones and may have the opportunity to form more crystallized views).

As Florida patient advocates, our team works with many clients facing chronic and terminal illnesses. Many of our clients come to us toward the end of their lives, while we work with others over a number of years throughout different stages of care and illness. This survey further brings to light some important points about end-of-life care and decisions. From this information and our patient advocacy experience, here are some take-away lessons on end of life care:

  • These decisions are very personal and often situation-dependent. Therefore, it is important to have continuous conversations about care issues as circumstances change. A patient advocate can help facilitate the conversation and get critical information from providers so that patients and families can make the most informed decision.
  • Advanced care planning and end-of-life care decisions are not a “once and done” issue. Completing and advance directive form, appointing a healthcare surrogate or saying you do/do not want certain measures in your living will are all only a small part of this process. Those who have cared for loved ones with chronic illness or served as patient advocates know this well. Multiple trips to the emergency room for small injuries or repeated pneumonia may lead to a discussion about continued treatment versus treating these issues as well as possible at home (or at the ALF or nursing home). When a different illness or injury comes up, this may lead to a different decision. When it comes to technologies, there may be times in a pattern of illness when a surgery or technology makes sense, weather for potential to extend life or for comfort, while at other times the same decision may not seem advisable. Treatment itself may change the process…such as for the cancer patient whose body is depleted by chemotherapy and thus not able to withstand the latest trial or the person who received radiation and is therefore not a good candidate for surgery to that area.
  • Understanding the circumstances, in quality of life terms, is the most important information for the patient and family to have. Patients need to understand prognosis…both likelihood of survival as well as what that survival will look like. What side effects are to be expected? What probable complications and long-term changes will occur? What help will the person likely need after treatment? There are often many variables to weigh. A professional patient advocate can often help you get these answers and break it down in to understandable terms (as well as review them with you as often as needed). A doctor’s office or hospital room with attending medical professionals is often the start of this conversation but should not be the end. The patient and family need time, when feasible, to make these tough decisions.
  • Practitioners need to take time to understand the patient/family perspective. This means having cultural awareness of different religious beliefs and cultural taboos which may be influencing both the conversation and the decisions. Fortunately, as patient advocates with social work training and a holistic viewpoint, this is an area where the Aging Wisely team shines. We understand the importance of assessment, both as a document and a process that continues. We know that it is important not only to know what diagnoses a person has, but their beliefs, their family situation, their mental health and emotional issues…and much more.

End-of-life decisions are part of a wider spectrum of care decisions that many patients and their caregivers will have to make. The conversations around these decisions are vital and good support from a professional patient advocate can facilitate the process. If your family needs help with patient advocacy…from advance care planning to navigating treatment and setting up a care plan through end of life/palliative care…give Aging Wisely’s award-winning patient advocates a call at 727-447-5845.

*Image courtesy of Vichaya Kiatying-Angsulee/ FreeDigitalPhotos.net

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