On Apr 16, 2014 · Comments
Are advance directives, living wills, health care proxies, and do-not-resuscitate instructions patient safety issues? The P.S. Blog asked two patient safety experts to weigh in on this topic. Ilene Corina, president, PULSE of NY, writes from the patient and family perspective. Paul Gluck, MD, Associate Clinical Professor OB GYN, University of Miami Miller School of Medicine, writes about what clinicians need to know.
Read Ilene Corina | Read Paul Gluck, MD
By Ilene Corina
Jerry sat at his friend Larry’s bedside knowing that Larry would die in the next few days, weeks, or months. No one seemed to know for sure what Larry’s future was. He was weakening from age and had been suffering from Alzheimer’s. At 80 years old, he’d had a good life, was well loved by family and friends, and until recently had lived independently with the help of Jerry, who had been hired two and a half years ago as a daily companion by family living in another state.
Now, however, Larry had suffered a stroke that affected his mind and body, and his family, in consultation with his physicians, had decided it was time to let him go peacefully.
Just months earlier Jerry—half Larry’s age—would look forward to visiting daily with Larry and listening to his stories of his younger days when he was in the army, then worked for a hotel chain. Together the men would visit friends and museums, followed by lunch at a local restaurant. Now Jerry wondered why Larry wasn’t even being given nourishment.
Jerry didn’t know if Larry had advance directives, but he knew that Larry’s son was his health care proxy and would be making the decisions for Larry when he couldn’t make them for himself. The doctors would speak to Jerry, and Jerry would relay information to the family. Keeping him alive wasn’t an option for the family. But Jerry didn’t feel that Larry was safe. Not having nourishment and being permitted to starve to death just didn’t feel right.
So the question is: are advance directives, living wills, health care proxies and DNR instructions patient safety issues?
The living will is not a new concept. Luis Kutner, a Chicago lawyer, is known for inventing the living will in 1930 so that critically ill patients could forgo artificial life-support. Kutner is also known as co-founder, in 1961, of Amnesty International, a global movement working for human rights.
Federal law requires most health care institutions to offer patients information about advance directives. But advance directives are still not widely used. A living will can prevent unwanted care, especially aggressive medical treatment at the end of life, and can help guide decisions about the way in which a patient would like to be treated if he or she loses the capacity to communicate.
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Problems and Issues
But there could be problems with advance directives, such as patients nominating a loved one without ever really discussing the patient’s wishes with that person.
According to an article in the Annals of Internal Medicine, many proxies either do not know patients’ wishes or do not pursue those wishes effectively (Perkins 2007). Thus, unexpected problems arise often to defeat advance directives.
A living will may direct physicians to undertake no “aggressive” measures at the end of life or to treat a patient in a certain way when that patient is suffering from a “terminal” illness. This nonspecific language must be interpreted by the family and the medical team.
Living wills and advanced directives were widely discussed when the story of Karen Ann Quinlan made headlines in 1975. She had slipped into an irreversible coma. After making the decision to remove Karen Ann from life-support, the family had to petition the court. When the machines were finally removed, Karen Ann continued breathing on her own for nine years until she died from a pneumonia at the age of 31.
In the 1990s advanced directives were in the spotlight when 26-year-old Terry Schiavo fell into a coma following a cardio-respiratory arrest. Terry was put on a ventilator but was soon able to breathe on her own. She remained in a severely compromised neurological state and was provided a PEG tube to ensure the safe delivery of nourishment and hydration. In 1998 Terry’s husband, Michael, petitioned the state of Florida to remove her feeding tube—a decision that was challenged by her parents. On March 31, 2005, at 41, Terri Schiavo died of dehydration following more than 13 days without nutrition or hydration under Court order.
When patients, families, and medical professionals are asked about advance directives being a patient safety issue, there are mixed reviews.
Some patients and family members who were interviewed are quick to say they are. This can be because without a health care proxy or someone prepared to speak for the patients unable to speak for themselves, both patients and families may feel unsafe. Who will, after all, make sure patients are getting the best care possible?
Others feel it is an ethical concern or a patient’s rights issue, but not about safety.
When asked if advance directives are a patient safety issue, Gary Kaplan, MD, chairman and chief executive officer of Virginia Mason Hospital and Medical Center, said, “Yes….safety is about avoiding harm. This requires appropriate care. Appropriate care is respectful, cognizant of, and fulfilling of patients’ wishes. This would include end-of-life care, living wills, etcetera.”
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Promoting the Discussion
The Conversation Project, developed in collaboration with the Institute for Healthcare Improvement (IHI) seeks to encourage and support people in expressing their end-of-life wishes for care. The Conversation Project does not promote a particular position, but instead, believes that patients and their families must be engaged in the decision-making.
Maureen Bisognano, president and chief executive officer of IHI, was asked about her thoughts on whether advance directives are a patient safety concern. She replied, “Yes, I’d consider them a safety issue. If [advance directives are] not transmitted to the providers, or not adhered to, care that is unwanted or unneeded may be delivered.”
Now in its seventh year, National Healthcare Decisions Day (www.nhdd.org) “exists to inspire, educate and empower the public and providers about the importance of advanced care planning. National Healthcare Decisions Day is an initiative to encourage patients to express their wishes regarding health care, and for providers and facilities to respect those wishes, whatever they may be.”
NHDD is celebrated on April 16 of each year. Nathan A. Kottkamp, chair of the National Healthcare Decisions Day initiative explains, “If a patient really doesn’t want to have chest compressions in the event of cardiac arrest and receives them anyway, thus breaking ribs and increasing pain, it would be a safety issue.”
Jim Conway, adjunct faculty, Harvard School of Public Health, explains his opinion: “The IOM in the Chasm report (IOM 2001) defines patient safety as ‘the prevention of harm to patients.’ AHRQ has defined the prevention of harm as ‘freedom from accidental or preventable injuries produced by medical care.’ So yes, I can easily imagine the failure to honor a patient’s advance directive as a patient safety event.”
The Long Island Patient Safety Advisory Council which began as part of my NPSF-AHA Patient Safety Leadership Fellowship training, focuses on patient safety education in the community. One of the focuses was having people discuss their advance directives. Recognizing that it is not an “old person’s” issue, the council worked with Hospice Care Network on Long Island and Nassau County Youth Board to develop information appropriate for everyone. There is now a brochure called Advanced Directives and Speaking to Young People. LIPSAC has partnered with Momma’s House on Long Island, and we talk to young mothers about advance directive and help them fill them out.
The National Patient Safety Foundation defines patient safety as the “avoidance and prevention of adverse outcomes or injuries stemming from the processes of health care.”
So we must ask ourselves: if there is no injury from not having an advance directive, is it a patient safety concern? Or is patient safety only an issue after a patient is harmed?
Ilene Corina is a patient safety consultant and the founder and president of PULSE of NY. Write to her at firstname.lastname@example.org.
Comment on this post below. Read the companion post by Paul Gluck, MD.
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References and Further Reading
Institute of Medicine (IOM). 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C: National Academy Press. Available at: http://www.iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx [see in context]
Perkins HS. 2007. Controlling death: The false promise of advance directives. Ann Intern Med. 2007 Jul;147(1):51-57. [see in context]
Pulse of NY Patient Safety Advisory Council. Advance Directives and Speaking to Young People. Brochure. Available at http://pulseofny.org/resources/Advanced%20Directives.pdf
Wikipedia. Terri Schiavo Case. Available at: http://en.wikipedia.org/wiki/Terri_Schiavo_case
by Paul Gluck, MD
An advanced directive is a legal document based on the ethical principle of patient autonomy that expresses their wishes in relationship to future medical care when they might no longer be able to communicate their desires. These take 2 primary forms; a living will executed by the patient or the appointment of a health care surrogate. Do Not Resuscitate decisions are an important and specific component of a living will.
It is important to emphasize that an advance directive is not just a signed piece of paper but is a process in which the individual makes his or her desires known regarding end of life care to relatives as well as medical professionals. In the story about Larry, his family clearly made some difficult decisions regarding his end-of-life care. What is unclear was Larry’s participation in this process before he suffered a stroke and further communicating of this discussion to Jerry. These decisions should be reviewed with the patient, caregivers, and family, and updated periodically as an important component of routine medical care.
Initially an advance directive was considered an ethical imperative. Subsequently it became a legal imperative with the passage of the 1991 Patient Self-Determination Act. Now, as noted by Corina, the advance directive is also considered an important component of patient safety that seeks to reduce elements of overuse, underuse, and misuse of medical therapy. (Tice 2007)
Despite the importance of advance directives, current estimates of compliance range from 20% to 55% (Wheatley 2012). Variation is impacted by specific patient populations (greater for terminally ill patients), settings (greater for nursing home patients), (Wheatley 2012) health care provider factors (age, experience, and specialty) (Coleman 2013), family engagement (Duke 2007) and cultural attitudes toward death and dying. (Giger et al. 2006)
There are several barriers that limit the discussion of advance directives. Significant from the patient’s perspective are denial and concerns about reactions of relatives. Physicians often cite time constraints, emotional discomfort, and lack of experience. (Tierney et al. 2001)
Even if there is an advanced directive document in the patient’s record, there are significant problems related to lack of specificity. Subsequent interpretation of the patient’s wishes by both family members and healthcare professionals may then be based on their value judgments, not necessarily that of the patient. (Thompson et al. 2003)
As with many other patient safety issues, a multidisciplinary approach may be helpful. Often clergy and social workers are more adept with these difficult conversations. Using their expertise for resident training will improve physician’s comfort and increase compliance especially in the hospital setting. (Deep et al. 2007)
Implementation of an advance directive process has many benefits to providers, to patients and their family and to a resource constrained healthcare system. Patients and families should expect these discussions and, if not implemented by the healthcare team, should be empowered to begin the conversation.
Paul Gluck, MD, is associate clinical professor, OB/GYN, at the University of Miami Miller School of Medicine and senior medical advisor, Stevens & Lee, LLC. Contact him at email@example.com.
Comment on this post below. Read the companion post by Ilene Corina.
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Coleman AM.2013. Physician attitudes toward advance directives: a literature review of variables impacting on physician’s attitudes toward advance directives. Am J of Hospice & Palliative Care, 30(7):696-706. [see in context]
Deep KS, Green SF, Griffith CH, Wilson JF. 2007. Medical residents’ perspective on discussions of advanced directives: can prior experience affect how they approach patients? J Palliative Med. 10(3):712-20. [see in context]
Duke G, Thompson S, Hasie M. 2007. Factors influencing completion of advance directives in hospitalized patients. Int J Palliative Nursing, 13(1):39-43. [see in context]
Giger JN, Davidhizar RE, Fordman P. 2006. Multi-cultural and multi-ethnic considerations and advanced directives developing cultural competency, J Cultural Diversity, 13(1):3-9. [see in context]
Thompson T, Barbour R, Schwartz L. 2003. Adherence to advance directives in critical care decision making. BMJ. 327(422). Available at: http://www.bmj.com/content/327/7422/1011.reprint [see in context]
Tice MA. 2007. Patient safety: Honoring advanced directives. Home Healthcare Nurse: The J for the Home Care and Hospice Prof. 25(2):79-81.[see in context]
Tierney WM, Dexter PR, Gramelspacher GP, et al. 2001. The effect of discussions about advance directives on patient satisfaction with primary care, J Gen Int Med, 16(1):32-40. [see in context]
Wheatley E, Huntington MK. 2012 Advanced directives and code status documentation in an academic practice. Fam Med. 44(8):574-8.[see in context]