Importance of an Advance Directive & Appointing a Healthcare Proxy

In a 2010 study from the New England Journal of Medicine entitled Advance Directives and Outcomes of Surrogate Decision Making Before Death, the investigators from the University of Michigan and the VA Medical Center in Ann Arbor took a look at how often advance directives and living wills were in place for a group of seniors and how often their wishes were honored and carried out by their healthcare proxies who had to make decisions near end of life.

Advance Directives Defined

The investigators defined advance directives as:

  • Advance directives document patients’ wishes with respect to life-sustaining treatment (in a living will), their choice of a surrogate
    decision maker (in a durable power of attorney for health care), or both
  • Intended for patients who lose decision making capability, improving likelihood that they will receive the care that they want by choosing a surrogate decision maker

Current Use of Advance Directives

  • Currently, up to 70% of community-dwelling older adults have completed an advance directive
  • Recent studies have shown that patients with advance directives are less likely to receive life sustaining treatments or to die in a hospital

Comment: In order for you or a loved one to avoid death in a hospital or to avoid interventions such as mechanical ventilation or artificial feeding, you need to have a completed advance directive, appointed a proxy (surrogate) for healthcare decisions and discussed your wishes with them.

Data Sources and Study Population

  • Study used data from the Health and Retirement Study
  • Study limited to patients 60 years and older who died between 2000 and 2006 for whom a healthcare proxy had completed a study-directed exit interview after the participant’s death (within 24 months)

Study Results

The study population focused on those who were over age 60 who died during the 6 year study (n=3,746)

  • A total of 4,246 respondents died during the 6 year study
  • Exit data was obtained on 3,963 (93.3%) of those decedents (patients who died) from their proxies (surrogate decision makers)
    3,746 (88.2%) were 60 years or older at the time of death
  • According to the respondents, most deaths (58.6%) were “expected” at about the time that they occurred
  • (Comment: There is really no reason for all of these patients to have not had appointed a healthcare proxy and completed an advance directive given there was plenty of time to complete these steps)

  • In 67.9% of the subjects there was a week or more between the time of diagnosis and death
  • (Comment: a large number of seniors were provided with a late diagnosis and prognosis. The usual culprit, in my opinion, is lack of patient-centered care that included open and honest conversations about disease trajectory, treatment options including their goals, costs and risks, prognosis and hospice & palliative care as options)

Before death, subjects commonly had:

  • Heart Disease 53.7%
  • Depression 48%
  • Cancer 35%
  • Cerebrovascular Disease (post Stroke) 25.6%
  • Lung Disease (COPD) 24.1%
  • Cognitive Impairment (Alzheimer’s & other dementias) 45.7%

Comment: Most of these seniors had a combination of these diseases putting them at even greater risk of mortality, more than half suffered from the #1 killer of Americans, heart failure with an unpredictable disease trajectory, where best practice would be earlier conversations about prognosis and the aforementioned patient-centered care approach.

The subjects were most likely to have died:

  • In hospitals 38.9%
  • In their homes 27.3%
  • In nursing homes 24.5%

Comment: Only about a quarter of these seniors died at home, where most people would prefer to spend their final days. In my opinion and in my experience, the lack of patient-centered care, honest conversations and advance care planning lead to these kind of outcomes.

Proxy Respondents (Who Made End of Life Healthcare Decisions?)

  • Adult Children 48.9%
  • Spouses 32.5%
  • Other Relatives 13.5%
  • Proxies of decedents were the decedent’s actual decision maker 79.5% of the time

Need for Decision Making at End of Life

  • Of the 3,746 decedents, 42.5% required decision making about the treatment in the final days of life
  • The most common causes for the need for end-of-life decision making were:
    • Memory deficits (Dementia)
    • Cerebrovascular disease (Stroke or Coma)
    • Nursing home status
    • Loss of a spouse

Prevalence of Lost Decision Making Capacity

  • Of the 1,536 decedents who required decision making, complete data was available for 1,409
  • 70.3% lacked decision making capacity
  • Those who were less likely to retain decision making capability were those with:
    • Cognitive Impairment
    • Cerebrovascular Disease
    • Residing in a Nursing Home
    • At least 76.6% of the overall population had at least
      one of these characteristics

Advance Directives and Stated Preferences

Of the 999 decedents who needed decision making and lacked that capacity (29.8%)

  • 67.5% had an advance directive
  • 6.8% had a living will only
  • 21.3% had a durable power of attorney for health care only
  • 39.4% had both (Comment: You need both!)

Among decedents who had only living wills

  • 1.9% had requested all care possible
  • (Comment: It’s important to understand that all care possible can result in wasted care and needless suffering by the patient in their final days.)

  • 92.7% had requested limited care
  • 96.2% had requested comfort care

Among decedents who had a durable power of attorney (DPOA) for health care only

  • 64.6% had appointed a child or grandchild
  • 26.9% had appointed a spouse or partner
  • 6.6% had appointed another relative
  • 1.9% had appointed a non-relative

Living wills were completed a median of 20 months before death.  Durable POA for Health Care was completed a median of 19 months before death.

(Comment: You should complete these documents long before this point, when you are well and clear thinking. You don’t know when a heart attack or stroke may occur and leave you unable to speak for yourself.)

Living Wills and Care Received

  • Incapacitated subjects who had prepared a living will were less likely to receive all treatment possible and more likely to receive limited treatment
  • Living wills were associated with increased odds of receiving comfort care and a trend toward decreased odds of dying in a hospital
  • Among the 435 incapacitated subjects who had prepared living wills and who had expressed a preference for or against all care possible, there was strong agreement between their stated preferences and the care they received
  • Outcomes appeared to vary according to the choice made:
    • Of the 425 subjects who did not indicate a preference for all care possible, 30 received it (7.1%)
    • Among the 10 subjects who did indicate a preference for all care possible, 5 received it (50%)
    • Of those subjects who did not receive their choice, 4 had appointed a Durable POA for Health Care
    • Of the 398 incapacitated subjects who had prepared a living will and requested limited care, 331 (83.2%) received it
    • Of the 36 subjects who had not requested limited care, 17 (47.2%) received it
    • Of the 417 incapacitated subjects who had requested comfort care, 405 (97.1%) received it
    • Of the 29 subjects who did not request comfort care, 15 (51.7%) received it
  • A total of 89% of the proxies reported that the living will was applicable to most decisions faced by surrogates
  • A total of 13.6% of proxies reported problems following the subject’s instructions

Durable POA, Surrogate Decision Maker and Treatment Received

  • 91.5% of the time, the actual surrogate decision maker matched the appointed surrogate
  • Subjects who appointed a Durable POA were less likely to die in a hospital or receive all care possible

Comment: To ensure that you receive the kind of care that you want at end of life, appoint a healthcare proxy and complete an advance directive or living will. Failing to do so exposes you to aggressive interventions, death in a hospital ICU, and puts tremendous burden on your family to make healthcare decisions without your direction.

Discussion

Surrogate decision making is often required for elderly Americans at the EOL

  • 42.5% needed decision making about medical treatments before death
  • 70.3% of these subjects lacked the capacity to make those decisions themselves
  • In total, 29.8% of all decedents needed decision making but lacked the capacity
  • Findings suggest that more than a quarter of elderly adults may need surrogate decision making before death
  • Predicting which people may need surrogate decision making may be difficult
  • Cognitive impairment, cerebrovascular disease, and residence in a nursing home were associated with lost decision making capability
  • These characteristics were present in 76.6% of the entire study population

Summary

  • More than 25% of elderly adults may require surrogate decision making at the EOL
  • Both a living will and a durable POA for health care appear to have a significant effect on the outcomes of decision making
  • Advance directives are an important tool 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 needed to plan appropriately for the EOL
  • Data suggest that most elderly patients would welcome these discussions

Comment: With physicians lacking time, lacking training on discussing poor prognosis, lack of incentives for their time and their focus on cure…it is vital for the patient, proxy, caregivers, family members to ask questions to learn the truth, so that they can plan and make informed decisions. It is up to you!

To relieve your family of the burden of needing to make end of life healthcare decisions for you and to get or avoid aggressive interventions and care, you need to a) appoint a healthcare proxy (a durable medical power of attorney), b) complete and file an advance directive or living will, and c) discuss your wishes with your proxy to emphasize and clarify what you find acceptable and unacceptable regarding end of life care. Don’t wait, do it sooner rather than later.

Source: N Engl J Med 2010; 362:1211-1218April 1, 2010DOI: 10.1056/NEJMsa0907901

Note: Reprinted with permission from Months Not Days blog.

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