Advance directives are written instructions for a person's end-of-life health preferences. They're associated with some positive health outcomes and reduced health care spending.
Most people younger than 65 have not completed an advance directive, but their use increases by age.
Higher-income Coloradans and those who have graduated college are more likely to have completed an advance directive.
Nearly a quarter million Coloradans are facing their retirement years without an advance directive to help ensure their end-of-life wishes will be honored.
That’s one-third of all Coloradans aged 65 or older. Among younger residents, even fewer have completed advance directives.
It’s tough for most people to think about — let alone talk about — dying. But those who make mindful efforts to communicate end-of-life preferences can increase their chances of receiving the type of medical care they want.
Advance directives can convey people’s wishes in writing when they are unable — cognitively or physically — to make decisions about their health care.
The 2017 Colorado Health Access Survey (CHAS) included questions about advance directives for the first time in the survey’s history.
The topic is gaining increased attention for a number of reasons. Colorado’s population is aging rapidly. The state’s 65-plus age group is expected to increase 51 percent by 2030, from 812,600 to 1,226,300.
Meanwhile, advance care planning is associated with fewer hospitalizations, a lower likelihood of dying in the hospital, and increased use of hospice care.
Advance care planning also has the potential to reduce health care spending between five percent and 68 percent, according to a 2016 review of multiple studies.
All advance directives are optional, and they can be changed, updated or discarded at any point. Advance directives cost nothing, although if someone opts to use an attorney there would be a charge.
This paper analyzes the new CHAS data regarding advance directives, including their use by age, race/ethnicity and health status. It also examines efforts in Colorado to increase the use of advance directives.
Advance Directives 101
Advance directives are written instructions for a person’s end-of-life health care preferences. For example, people may reject life-extending treatment in favor of care that reduces pain and emphasizes comfort.
The advance directive also may name a health care agent — the person trusted to make life-and-death medical decisions. If the patient has not designated an agent in advance, Colorado law tells doctors to locate all “interested persons” and select one to serve as the patient’s health care agent.
Advance directives are part of a broader advance care planning process that also involves discussions about medical preferences with loved ones and providers.
In Colorado, there are four main types of advance directives, each with a different purpose.
Medical Durable Power of Attorney
A medical durable power of attorney, or MDPA, allows people to appoint a health care agent to make decisions on their behalf. The agent is obligated to act according to the wishes and values of the patient. This directive also grants access to medical records. It is not necessary to use a lawyer or financial planner – MDPA forms are available online – and a witness’s signature and notarization is optional but recommended.
A living will, formally referred to as “Declarations as to Medical Treatment,” instructs physicians regarding artificial life-support when patients cannot speak for themselves or are in a persistent vegetative state. However, living wills do not allow someone to make medical decisions on behalf of another person. Like MDPAs, living wills do not require an attorney or a doctor, but signatures of two witnesses are mandatory. Living wills should not be confused with traditional wills or living trusts, which pertain to property.
Medical Orders for Scope of Treatment
A Medical Orders for Scope of Treatment form, or MOST, is for those who are seriously or chronically ill and in frequent contact with providers. MOSTs provide specific instructions to providers about which medical interventions to perform or to avoid and must be signed by both the patient and the provider.
The cardiopulmonary resuscitation (CPR) directive is also a medical order, and it instructs providers not to resuscitate if a person’s heart or breathing stops. This type of advance directive is typically for people who are frail or seriously ill and for whom CPR may do more harm than good. The doctor and patient must sign this form.
The National Institute on Aging recommends that all adults have at least a medical durable power of attorney in place.
Use of the other documents depends on circumstances, particularly age and health. (See Figure 1.) For example, someone who is older and in poor health may opt to have all four types of advance directives.
Advance Directives and Aid-in-Dying: Not the Same
Colorado voters passed a medical aid-in-dying measure in November 2016 that made it legal for terminally ill people to end their lives through prescription drugs. Advance directives are different. They are used to plan for medical care when people can’t make their own decisions at the end of life. An advance directive can’t call for providers to administer drugs that would end a patient’s life.
Advance Care Directives in Colorado: By the Numbers
Most people in age groups below 65 haven’t completed an advance directive, although their use increases with age, according to the CHAS. Just one of 10 Coloradans in early adulthood, between ages 18 and 24, has an advance directive, while 45 percent of those on the cusp of retirement, between ages 55 and 64, have completed a form.
The most common reason Americans give for not having an advance directive is that they just have not gotten around to it (49 percent). Nearly three of 10 (27 percent) say they have never considered it. And five percent worry about changing their minds.
About two of three older adults in Colorado (66 percent) have completed an advance directive, 20 percentage points higher than the national average of 46 percent. Even so, that leaves one-third of Colorado’s older adults without an advance directive. There’s little difference between Colorado and the nation when it comes to younger adults.
Comparisons of U.S. and Colorado rates should be made cautiously since they are based on different surveys. For example, the national data covers multiple years (2011 to 2016) while the CHAS only looks at 2017. Also, U.S. rates do not include data about documents similar to Colorado’s MOST, which may partially explain Colorado’s higher completion rates. Other factors also may explain why older adults in Colorado are more likely to have an advance directive than older adults nationally, including:
- Incomes are higher in Colorado. While it is not necessary to use a lawyer or financial planner to get an advance directive, many people take that route. In Colorado, the median income of older adults is greater than most other states, which means they may be more likely to plan for the future — for asset transfers as well as medical wishes.
- Colorado has organized advocates. Groups such as the Colorado Advance Directives Consortium have been working since 2010 to encourage the adoption of the MOST as well as other types of advance directives. The MOST is part of a nationwide movement to encourage patients and doctors to develop medical orders when a person is seriously ill or fragile.
Coloradans with lower incomes and less education are less likely to have advance directives. (See Table 2) Men are less likely than women to have an advance directive. And people of color are less likely to have one than white Coloradans.
The demographic differences suggest that advance care planning presents a health equity issue. These differences are influenced by socioeconomic factors but also by religious beliefs, culture, health literacy levels and trust in providers.
For example, Latinos tend to prefer family-centered decision-making and may hold different attitudes about hospice because that term in Spanish refers to a place for the poor or homeless. The Colorado Latino Community Foundation, responding to the lower rate of advance care planning among Latinos, has partnered with the Colorado Gerontological Society to develop more culturally relevant ways to discuss end-of-life planning.
Other factors seem to make little difference in the use of advance directives. Coloradans in fair or poor health are not more likely to have completed an advance directive than people who are healthy, according to the CHAS. And rural and urban dwellers are equally likely to have an advance directive. Even when people complete an advance directive, some do not take the next important step of discussing it with their loved ones and doctors. About nine of 10 Coloradans (89 percent) with advance directives have discussed their wishes with a friend or family member. Additionally, 41 percent have discussed their preferences with a medical provider.
Efforts to Increase Advance Care Planning
Community groups and medical providers have led efforts to increase the use of advance directives in Colorado.
This analysis points to a few ways to promote advance care planning. Future efforts could focus more heavily on populations that are less likely to have an advance directive. The National Academies of Sciences, Engineering and Medicine recommends that community groups — civic organizations, nonprofits and public health groups — intentionally engage underserved populations, dispel misinformation and encourage meaningful conversations about care options.
Most medical conversations about end-of-life preferences are initiated by a physician. It is important that medical providers are prepared to talk about difficult decisions with patients.
The federal government in 2016 began allowing doctors to receive Medicare payments for advance care planning. Other barriers to provider engagement remain, however, including lack of time, low communication skills and discomfort with the subject.
Most physicians also report not receiving formal training on end-of-life conversations, according to a 2016 survey. The Association of American Medical Colleges now requires all medical schools to include some level of training in end-of-life care, but the amount and quality vary.
In Colorado, 30 percent of physicians say more training is needed to systematically incorporate advance care planning into routine care. (See Figure 4.) But this is changing. The Center to Advance Palliative Care has created a guide to help providers start these conversations.
And the Colorado Advance Directives Consortium has offered training to health care professionals about advance directives, particularly the MOST, since 2010. The consortium includes the Colorado Hospital Association and the Colorado Health Care Association as well as several state agencies and nonprofits.
Colorado statutes appear to be more flexible and less burdensome than those of many other states.
Some states limit who can witness advance directives and require that forms be notarized. Colorado requires neither witnesses nor notarization for the medical durable power of attorney. Colorado does require witnesses for living wills. Advanced practice nurses and physician assistants can sign MOSTs.
While Colorado law specifies information that must be included in the forms for each type of directive and who must sign them, there is not a universal document. The Colorado Advance Directives Consortium, however, encourages using the MOST form.
A bill in this year’s Colorado legislature, HB18-1182, would have directed the Colorado Department of Public Health and Environment (CDPHE) to establish an online registry of advance directives that could be uploaded for quick access, particularly in emergency situations. Oregon and Idaho already have online advance directive registries. While the sponsors of the Colorado bill withdrew it, a similar effort could come back next year.
States can also fund and promote education around advance care planning. Colorado agencies have not taken on these roles, but CDPHE does administer the CPR directive and participates in the Colorado Advance Directives Consortium.
Public policy has a limited role in helping to increase advance care planning. A balance of community-led and provider-led efforts to increase the use of advance directives will be key, including educating all Coloradans about the need to have ongoing discussions with trusted family, friends or doctors about their preferences.
Opportunities remain to target outreach and education efforts, particularly for the one-third of older adults in Colorado without advance directives. Other opportunities exist for black and Latino populations and for people with lower incomes.
The Colorado Medical Decision Treatment Act formally recognizes the right of competent adults to accept or reject medical treatment. It also creates a process for people to plan for making medical decisions in the event they are unconscious or incompetent. Colorado Revised Statutes, Title 15, Article 18.
Resources for Coloradans
Advance directive forms can be found on the Colorado Advance Directives Consortium website.
Toolkits for how to start a conversation about advance care planning are available at The Conversation Project.