Advance Care Planning
"The training of health care professionals should include serious and systematic attention to the requisite skills for working with dying patients."--President's Commission, 1983
The above statement is from the 1983 "President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research." Within this 570 page report, the Commission also made the remark that "Some health care professionals have cited their lack of such training as an impediment in caring for dying patients." Another important statement that they made is "Educational reform must entail greater change than adding a dash of the humanities to already overburdened health care curricula. What is needed instead is systematic attention to the social, ethical, psychological, and organizational aspects of caring for dying patients." Wow, that Congressional Commission's work was back in 1983, 27-years ago! Too bad a recommendation was not made at that time by this Commission to require all health care professionals to become certified in palliative life care. [President Barack Obama, this is unfinished work.] That Commission even provided a 23-page appendix with some basic information about treating symptom burdens that dying patients commonly experience. That same type of subject matter could be included in a detailed study guide for palliative life certification.
"The decisions of surrogates should, when possible, attempt to replicate the ones that the patient would make if capable of doing so." --President's Commission (1983)
Advance care planning (ACP) is a process whereby people begin to talk about and use forms to make known--ahead of time--what their preferences are for end-of-life care. This is very important because if these preferences are not know, the people who are appointed to make decisions will have to basically guess what the individual would have preferred for end-of-life care, which includes life-sustaining treatments, organ donation, autopsy, and burial or cremation. Only about 20% of patients with a life-limiting disease have an advance directive or disclose their preferences for EOL care. This is why so many terminally ill patients die in the intensive care unit (ICU), which substantially increases the cost of care and significantly depreciates the quality of life, as well as making the burden upon the family much more unbearable.
One serious and persistent problem in health care is that too few people with a life-limiting disease have an advance directive or a living will document. This is an interesting paradox since it generally takes a number of years for a disease to progress to the point that it becomes terminal. Patient's with life-limiting diseases generally have numerous encounters with their physician and other health care worker's. You would think that at some point along the way most of these people would have a serious discussion about end-of-life treatment preferences with their physician or loved one, which would cause them to create an advance directive or living will. But this is not the case for most people. Only about 25% of people with a life-limiting disease have one of these forms.
ACP Discussions and Education Should be a Shared Responsibility--Not just a Physician Responsibility
Physicians currently have the sole responsibility of discussing advance directives with patients, but they have long failed to fulfill this obligation. This is understandable since physicians have so little quality time to spend with their patients. Conversely, nurses spend a great deal of time with patients and develop close, professional and trusting relationship with them and their family members. Nurses are the true patient advocates who spend 95% of interactive time with patients.
Nurses should have a simple scoring tool to evaluate whether a patient needs ACP education, and then the patient should be enrolled in a process of ongoing education and discussions of ACP. There are tens of millions of patients at any given time who have a life-limiting condition that will eventually progress to becoming a terminal illness, and their underlying cause of death. Patients with any life-limiting diagnosis should be enrolled in ACP education so that they can express their preferences for end-of-life care years in advance. Each subsequent visit will evaluate and document their current ACP preferences.
The current requirement in the USA is for patients to be asked if they have an advance directive. If so, it is noted in the chart and the directives are followed. If the patient indicates that they do not have an advance directive--end of discussion. This is wrong! If a patient with a life-limiting condition indicates that they do not have an advance directive, there should be a requirement for education about ACP and ongoing documentation.
In a recent article by Zhang et al titled “Health Care Costs in the Last Week of Life: Associations With End-of-Life Conversations,” [Arch Intern Med. 2009 Mar 9;169(5):480-8] it was indicated that “If the national proportion of individuals reporting EOL [end-of-life] discussions was increased to 50%, our results suggest that we would expect a cost difference of $76,466,891 between individuals who had EOL discussions vs those who had not based on the total number of US cancer deaths per year.” This is the savings for cancer patients, which accounts for only 23% of all deaths in the USA. In centers where healthcare workers are competent in palliative life care, there is a considerable greater use of advance directives amongst patients who have a life-limiting disease, which reduces their use of unnecessary and costly intensive care.
Induced Mental Incapacitation
People are often "rescued" from a life-threatening event (such as a heart attack), and then awaken on a life support ventilator, but are unable to effectively communicate because of a breathing tube in their windpipe, as well as being partially sedated and restrained to a bed. Family disagreement can occur, whereby one family member wants everything, whereas another one wants limited care. Hopeless patient's can then linger on for days or weeks before dying. Those who are not quite hopeless are eventually discharged home (more likely to an extended care facility) with residual organ failure and multiple life supports. [Read the Problems page.]
People generally do not feel it is important to discuss this while they are in relatively good health. Serious discussions about life support often occur during the last days or hours of life. Moreover, advance directives are often too complicated and intimidating for the average person. What's more, some people may feel that they are being persuaded to agree to limited care.
In 1990, the US Congress passed the Patient Self-Determination Act (PSDA) that requires all health care facilities to inquire with patient's about their advance directives, and/or provide them with information about this. The fact that the US Congress passed such a law is an indication of how important it is for people to have advance directives--or at least verbalize their preferences for end-of-life care.
What's the difference between an advance directive (AD) and a living will?
Two ways to avoid being mistreated at the end of life is with either an advance directive or a living will form. These are documents that specify in writing what treatment preferences are desired when an individual becomes mentally incapacitated. Mental incapacitation occurs when an individual is unconscious or in a physiologic state of incoherence or unawareness.
The 1983 President's Commission report disclosed that "When a patient lacks the capacity to make a decision, a surrogate decision-maker should be designated. Ordinarily this will be the patient's next of kin, although may be a close friend or another relative if the responsible health care professional judges that this other person is in fact the best advocate for the patient's interests." Further, "The Commission's broad use of the term "family" reflects a recognition of the fact that often those with most knowledge and concern for a patient are not relatives by blood or marriage. Although more than one person may fall within this.
Basically, a living will is a legal document that can be used to specify in writing what life support treatment choices are desired, as well such things as the choice for organ donation, autopsy, and burial or cremation. On the other hand, an advance directive (AD) is a legal document that specifies not only treatment choices, it also indicates whom the designated spokesperson will be for the person when they become mentally incapacitated.
One article that helps describe the difference between an advance directive and a living will is titled "Patients who complete advance directives and what they prefer." [Mayo Clin Proc. 2007 Dec;82(12):1480-6. PubMed] The investigators wrote this article in regards to their retrospective analysis of 500 patients who completed an advance directive document. That is, "Our purpose was to identify the preferences expressed by patients in their ADs and the characteristics of patients who completed them." In an opening statement, the authors' clarified the purpose the purpose of the advance directive by stating that "Advance directives are written health care instructions that are used when patients lack decision-making capacity. They maximize patient autonomy by clarifying patient health care values and preferences (eg, by avoiding unwanted medical interventions)." They further elaborated that "Three of the most common types of ADs are living wills, health care powers of attorney, and combined ADs. In the living will, the patient lists instructions about future medical treatments (eg, mechanical ventilation and artificial hydration and nutrition); sometimes these instructions are made for specific clinical scenarios (eg, terminal illness). In the health care power of attorney, the patient designates another person (also known as a health care agent, proxy, or surrogate) for making future health care decisions; the patient can also list second choices for when the primary agent is unavailable. Combined ADs have features of both a living will and a health care power of attorney."
The 2005 Presidential Commission report called "Taking Care: Ethical Caregiving in Our Aging Society, a report of the President’s Council on Bioethics." provided a good definition about a proxy directive by stating that "Proxy directives , frequently called “health care powers of attorney,” may also be written or oral. People making a proxy directive designate someone they trust to make medical decisions on their behalf and to act as their representative if they become incapacitated. People who would prefer one relative over another or a friend over a family member as their representative can use proxy directives to give effect to their preferences. Appointing a formal proxy can be especially valuable if a patient has no close family members, if the patient’s relatives are dispersed, or if relatives disagree among themselves."
A good summary of the PSDA can be found on Wikipedia, which is shown below.
The requirements of the PSDA are as follows:
· Patients are given written notice upon admission to the health care facility of their decision-making rights, and policies regarding advance health care directives in their state and in the institution to which they have been admitted. Patient rights include:
1. The right to facilitate their own health care decisions
2. The right to accept or refuse medical treatment
3. The right to make an advance health care directive
· Facilities must inquire as to the whether the patient already has an advance health care directive, and make note of this in their medical records.
· Facilities must provide education to their staff and affiliates about advance health care directives.
· Health care provides are not allowed to discriminately admit or treat patients based on whether or not they have an advance health care directive.
..."advance care planning is an oft-mentioned but underperformed function of being a physician in current American society. Our nation has become a people who deny physical vulnerability, frailty, and death. This area is not well taught in our medical schools and residency training programs." --David Grossman, MD
The above statement by Dr. Grossman is from the editorial "Advance care planning is an art, not an algorithm," which was written in regards to a review article about living wills that also appeared in the same issue of Cleveland Clinic Journal of Medicine. [Cleve Clin J Med. 2009May;76(5):287-8. PubMed] In this editorial, Dr. Grossman disagreed that the notion that the living will is not useful. He also made a statement that "Advance care planning is an essential component of being a physician and taking care of patients. A broad movement needs to be undertaken to re-educate people about the realities of life, illness, and death. The training of our physicians about advance care planning should begin early and should be continued throughout their medical education and careers."
The review article about advance directives that Dr. Grossman was referring to is titled "Advance care planning: Beyond the living will." [Cleve Clin J Med. 2009 May;76(5):276-85. PubMed] In this review article, the authors presented a good summary of the advantages and problems of advance directives. For instance, they noted that "Yet, despite the high profile of advance care planning, few patients actually fill out advance directives, with completion rates that vary widely, sometimes by ethnicity and sex. Furthermore, in a crisis, these directives are seldom followed." The latter statement is clarified by noting that "Even if completed, written advance directives may not be followed, for a variety of reasons. Physicians may not know the patient has a living will, and fewer than one-third of people who actually complete an advance directive have discussed its content with a physician. The people named as surrogate decision-makers may not know the patient’s wishes. Family members may disagree with the goals and plan of care and may interfere with implementation of the advance care plan. A patient may see multiple physicians at different institutions who may not communicate with each other about the patient’s wishes. Also, physicians and patients may interpret terms such as “terminally ill” differently, making it difficult to translate the documents into an action plan." There are some things that can be done to help minimize such problems from occurring, as they noted "All patients, particularly those unwilling or unable to participate in advance care planning, are encouraged to identify one or more surrogate decision-makers and articulate how much flexibility that person should be given in important health care decisions. The medical power of attorney can be activated any time the patient lacks decision-making capacity and deactivated when decision-making capacity returns." Physicians often play an important role in helping to get patient's with a life-limiting disease to complete an advance directive. The author's provided some important recommendations for physicians to follow, such as "A change in function resulting from disease progression, hospitalization, trauma, or other reasons is an ideal opportunity to introduce the process of advance care planning. The first step is to find out how well the patient and family understand the patient’s relevant medical conditions, and what their expectations, hopes, and concerns are. This listening phase can provide insight into the patient’s values and goals and how much the patient and family want to engage in these discussions. ...In matters of health behavior (such as advance care planning), people change only when they are ready to change. Thus, we advise physicians to defer extensive discussions of values and goals of care until patients and families are ready to listen, hear, and talk about these topics (often, after a change for the worse in prognosis). ...And it is a process. Advance care directives are most likely to be set up and followed if the patient and doctor discuss this issue during multiple visits, rather than if the physician merely hands the patient a packet of forms and information."
"An important aspect of EOL decision-making with patients is to begin the conversation about palliative care early in the course of illness. Palliative care should be implemented into the care plan early, while active treatments are being pursued." --Susan M. Parks, MD & Laraine Winter, PhD
The above statement is from the article "End of life decision-making for cancer patients." [Prim Care. 2009 Dec;36(4):811-23 PubMed] In this nice review article, the authors discussed a number of pertinent general topics about advance care planning. One thing they pointed out is that there are some factors that cause limitations in the use of advance directives. For instance, "Preferences for life-prolonging treatments and related medical options differ substantially and consistently by race and ethnicity. Differences are particularly marked between whites and African Americans. Compared with whites, African Americans tend to express stronger preferences for such treatments as tube feeding and are more likely to receive such services."
- "Research examining the association between religiosity and treatment preferences has found greater religiosity to be associated with stronger preferences for life-prolonging treatment."
- "Another variable known to affect EOL treatment preferences is the current health status of the decision maker. This research tends to support the view that preferences for life-prolonging treatment strengthen as individuals’ health declines."
- "Most Americans are decisionally incapacitated at the time of death, usually because of dementia, delirium, coma, or persistent vegetative state. This leaves the last decisions about medical treatment to proxies, usually family members."
- "Furthermore, preferences for life-prolonging treatment are known to change over time. In particular, they tend to shift in relation to a patient’s health status. As the patient’s health deteriorates, his or her view of life-prolonging treatments is likely to shift, generally in favor of more life-prolonging care. These phenomena should be borne in mind in understanding how patients and families deal with living wills and why they may reject them when the patient approaches EOL."
Probably one of the most common reasons that end-of-life discussions do not occur is because people do not want to give up hope. The authors' conveyed this message by stating that "This reluctance to communicate prognosis and the overestimation of prognosis is likely caused by multiple factors, including reluctance to deliver bad news, wanting to maintain hope, and not wanting to worry patients and their families. Attempts to protect patients and family providers, however, may actually do them a disservice." It is a disservice because the dying patient will likely be mistreated with curative care that is often overly aggressive, futile, and undignified. Palliative life care must be implemented as soon as a life-limiting disease is diagnosed. Advance care planning will begin and be followed as soon as palliative life becomes involved--even if it is years before death.
One reason why relatively few patients have an advance directive document is because they are often too hard to understand, and they have too many pages. One study that addressed this problem is a landmark article titled "Readability of state-sponsored advance directive forms in the United States: A cross sectional study." [BMC Med Ethics. 2010 Apr 25;11:6. PubMed] The investigators of this study examined 62 advance directive forms for 47 USA states. In their conclusion, they stated that "The readability of US state government-sponsored advance directive forms exceeds the readability level recommended by the National Work Group on Literacy and Health and the average reading skill level of most US adults. Such forms may inhibit advance care planning and therefore patient autonomy." One important remark made in this article is that "Generally, adults in the United States (US) view ADs favorably. Nevertheless, only about 20% of adults in the United States have completed an AD. One patient characteristic associated with AD completion is education level." And what they are referring to is "Notably, the average reading skill of US adults is at the level of 8th grade or lower; in other words, 90 million adults have reading skills below the high school level. Of these adults, many lack the minimum skills necessary for comprehending patient education materials, informed consent forms, medication labels, and other health care-related materials. Indeed, hundreds of studies have shown that health care-related materials, regardless of the topic or content, are incomprehensible to most US adults. For example, most patient education materials and most consent forms are written at the 10th grade level or higher. Because of these findings, the National Work Group on Literacy and Health recommends a 5th grade readability level for health care-related written materials." For the 62 state forms that they used in their study, "The median page length was 5.5 pages (range, 1-41 pages)," and "None of the AD forms had a readability score at the 5th grade reading level or lower, and only 5 forms had readability scores at the 8th grade level or lower." Although the primary intent of the PSDA was to help promote the use of advance directives and help assure patient autonomy (self-determination), an advance directive that is too complicated to understand is essentially useless. The authors made reference to this by stating that "Providing incomprehensible AD forms to patients with low reading skills does not promote their autonomy; incomprehensible AD forms restrict patient autonomy by inhibiting patients from expressing their goals and preferences for future health care."
A single page and easy to use Short Form Advance Directive is now available. It uses and the acronym HOSPICE to help indicate that palliative life care is desired.
"Standard advance directives may themselves be a barrier to completion and understanding because most forms are written at a 12th grade reading level and contain complex medical and legal terminology." --Rebecca L Sudore, MD, et al
The above statement is from the article "An advance directive redesigned to meet the literacy level of most adults: A randomized trial." [Patient Educ Couns. 2007 Dec;69(1-3):165-95. PubMed] This was a randomized trial with 205 English and Spanish speaking patients with an age of 50 or more who used either a standard advance directive form or a new form that was easier to fill out. The old advance directive form consisted of "The standard California advance directive is an 8-page document written at a 12th grade reading level using 12-point font size, without color or pictures. The form contains the following advance care planning topics: purpose of advance directives, designation of a power of attorney, preferences for treatment (“choice not to prolong life” or “choice to prolong life”), organ donation, autopsy, and the treatment of pain. The standard form can be accessed at http://www.caringinfo.org ." The new form that they created was a 12 page document that had some graphics added and used size 14 font text and was written at the 5th grade reading level. The investigators stated that "Given the prevalence of limited literacy, many patients may be given advance directives they cannot act on or understand. This may impede patients’ ability to make or articulate treatment preferences, and may threaten informed decision-making around end-of-life care. This study assessed an advance directive redesigned to an appropriate reading level (5th grade) with a clear layout and the inclusion of graphics. Compared to the standard form, the redesigned advance directive was rated easier to use and understand, more useful in treatment decisions and discussions, and of greater value in advance care planning. These effects were observed for all participants, but particularly for participants with limited literacy." The link in the article for CaringInfo.org is a place where advance directives for each state can be down-loaded.
"Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language." -- Lori Wiener, PhD, et al
The above is a statement from the article "How I wish to be remembered: The use of an advance care planning document in adolescent and young adult populations." [J Palliat Med. 2008 Dec;11(10):1309-13. PubMed] The authors' of this article performed a survey with 25 people aged 16 to 28 years old to determine how they felt about the use of an advance directive called "Five Wishes" to express end-of-life (EOL) preferences. The results of their survey showed that "Ninety-five percent of the participants reported that an advance directive like Five Wishes® would be “helpful” or “very helpful” to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes® “stressful” or “very stressful.” Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making." To describe the document, they stated that "This is a document that appoints a legal health care decision-maker at the end of life and specifies desired medical and palliative care treatments (http://www.agingwithdignity.org)." They also pointed out that over 6-million adults in the world have used Five Wishes. What's more, "It was created in association with doctors, nurses, and lawyers, and is recognized as a legal document in 40 states and the District of Columbia." A further description noted that "The document is organized into five “wishes” that concern different parts of the EOL care process:
- The Person I Want to Make Care Decisions for Me When I Can’t
- The Kind of Medical Treatment I Want or Don’t Want
- How Comfortable I Want to Be
- How I Want People to Treat Me
- What I Want My Loved Ones to Know"