Many patients require decisions about their health care at the end of life when they no longer have the capacity to make decisions. Advance directives (living wills and health care proxies) are designed to protect a patients’ autonomy if they become seriously ill and unable to make medical decisions, but it is unclear how helpful advance directives are in ensuring that patients receive care consistent with their wishes.
Silveira et al. examined the association between preferences for care documented in advance directives and the health care they received at the end of life, using data from surveys of proxies of 3,746 adults 60 years of age or older who died between 2000 and 2006. More than one quarter of the patients required decision making at the end of life, but lacked decision-making capacity. They found that patients who had prepared advance directives received care that was strongly associated with their preferences.
“This study illustrates what a common issue this is,” says Mary Beth Hamel, deputy editor at NEJM. “Many people lose the ability to make decisions for themselves at the end of their life, yet decisions about their care need to be made.”
There has been much debate about the usefulness of advance directives, and controversy over how they might be used.
In an accompanying editorial, Dr. Muriel Gillick cautions, “The selection of medical interventions for an imagined future health state is problematic, since preferences change in the face of real rather than theoretical conditions.”
The challenge going forward is to incorporate advance care planning in a way that will benefit the many patients whose physicians and proxies will be faced with difficult choices about their health care.
The authors conclude, “Advance directives are important tools for providing care in keeping with patients’ wishes. For more patients to avail themselves of these valuable instruments, the health care system should ensure that providers have the time, space, and reimbursement to conduct the time-consuming discussions necessary to plan appropriately for the end of life.”
Do you recommend advance directives in your practice? Have you found that advance directives help or hinder decision making at the end of life? Do time constraints or reimbursement policies affect advance care planning?
I think time constraints and the compartmentalization of medicine are huge factors in the usefulness or the lack of usefulness of advance directives.
Doctors barely have 15 minutes with their patients. Many patients see more than one doctor. Many physicians are uncomfortable with this conversation. Some feel like they failed when they are discussing death. It also has to do with when this conversation takes place. This conversation often takes place when their is no medical options left and the family is hoping for one more option. A miracle.
Well how about if we shift the thought process to what would you want in case something happens to you. Make it part of the norm to discuss advance directives. Everyone over 18 should have advance directives. Everyone should have a conversation with their HEALTH CARE PRACTITIONER to discuss the medical options available and make decisions based on their values and update it regularly.
I am not necessarily sure that all doctors are the right people for the job. Why not nurses? Why not make a sub-specialty of nursing. Nurses see patients throughout the continuum. Nurses are educators and advocates.
Let’s look at the history of advance directives. The first living will was developed by an attorney. It is a legal document that is often executed by an attorney and followed by a physician and reviewed by a nurse. If these documents are drafted by attorney can the medical profession understand them and follow them as prescribed by the person asking the attorney to draft it, our patient. Do they have informed consent for the procedures that they want us to perform on them?
I know in New York that the hospitals are charged with asking patients if they have advance directives. The hospital is also to supply a health care proxy on admission. Most of these forms end up in the bedside table next to the bed never to be seen from again. The person delivering this document is the unit secretary. No discussion takes place.
It is time that this discussion gets the attention that it requires.
Modern medicine has evolved. Through modern technology we have increased our ability to exist on this earth. We need to discuss what medical choices are available and at what quality of life these medical measure will bring if any.
In summary: My goals are to change legislation so that nurses who are specialists in discussing advance care directives are able to be reimbursed for this discussion.
Take the advance directive process out of the hands of the attorneys and place it in the hands of a group that can translate medicine into English. Why not nurses?
Fern Wasserman RN MSN ANP BC APRN CLNC
President
New York Legal Nurse Consultants inc.