AHRQ Study for Advance Care Planning
Agency of Healthcare Research and Quality (AHRQ) performed a detailed research on the current state of the effectiveness of the Advance Care Planning for the patients with chronic illnesses. The research finding indicates that most patients have not participated in advance care planning, yet many are willing to discuss end-of-life care. One way to determine patients' preferences for end-of-life care is to discuss hypothetical situations and find out their opinions on certain treatment patterns. These opinions can help clarify and predict the preferences they would be likely to have it if they should become incapacitated and unable to make their own decisions.
Studies funded by AHRQ indicate that many patients have not participated in effective advance care planning. The Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives. However, despite patients' rights to determine their future care, AHRQ research reveals that:
- Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
- Only 12 percent of patients with an advance directive had received input from their physician in its development.
- Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
- Having an advance directive did not increase documentation in the medical chart regarding patient preferences.
- Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed.
- Advance directives usually were not applicable until the patient became incapacitated and "absolutely, hopelessly ill."
- Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient had crossed a threshold over to actively dying before the advance directive was invoked.
- Language in advance directives was usually too nonspecific and general to provide clear instruction.
- Surrogates named in the advance directive often were not present to make decisions or were too emotionally overwrought to offer guidance.
- Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing the patient's advance directive.
- Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.
Why Advance Care Planning is Needed?
Advance care planning describes a patient expressing how other people should manage future medical problems when the patient is no longer able to make decisions about his or her care. A patient can document these plans as witnessed legal documents. Such a document is called a living will. It describes the kinds of treatments the person would or would not want to receive. A durable power of attorney for health care describes the person who should serve as surrogate and speak on behalf of the patient. Alternatively, a patient can choose not to execute these legal documents but instead have informal guides for care that are kept in a chart note or remembered conversation.
In general, the process of advance care planning benefits patients: decreasing depression, enhancing a sense of being in control and settling treatment preferences. It may be particularly useful in the case of patients who are at risk of problems with surrogate decision-making. Specifically, the patient may be estranged from their spouse, though not divorced, and living with a partner. Or the patient may not have a partner but several children who are not in close contact with each other. There are, of course, multiple permutations upon these kinds of family situations.
Advance Care Planning Limitations
The general point is that they present the risk that there may be disagreements among people over who has the authority to speak on behalf of the person and what is the proper way to care for them. A useful strategy to avoid such a situation is to ask a patient ‘Suppose your Alzheimer’s disease gets worse so that you can’t talk with me the way you are right now and instead I have to talk with someone else about how to take care of you. Who should I talk to? Who do you trust? Is there anyone in the family I should not talk to?’ However, as potentially valuable as advance care planning is, clinicians need to address three limitations to assure that advance care plans create an understanding and appreciation of the patient’s future, and identify values that should help to shape that future. The first limitation is the nature of the specificity of the directive. Living wills may seem to assure the strictest adherence to a patient’s self-determination, for example, ‘I do not want a feeding tube’. However, a directive applies to specific conditions, the most common of which is the condition of a terminal illness. In other words, the directive to withhold an enteral feeding tube would only apply in the event the person is not competent and also in a terminal state.
Such conditions limit the scope of the directive. And yet, the future health states that typically motivate people to make a living will are cases of a persistent vegetative state or severe dementia, both of which do not clearly describe a person who is terminal and may in fact live for at least a year or more. A clinician can address this limitation by fostering advance care planning conversations that focus on the patient’s goals, values and personal concepts of best interests, and are amended to include conditions such as persistent vegetative state or severe dementia.
A second limitation of advance directives is that many people do not see them as a means to determine precisely the course of future events. Specifically, people may not want to make specific plans for their future care in the same manner that they use a will to instruct people to manage their property. Instead, people may use an advance directive to entrust others to act in their best interests. Whereas a will for property typically states instructions such as ‘My sister gets the car and my son gets the boat’, a person may not want their living will to have the same degree of specificity. Instead of stating the decision specific ‘In the event I have severe stage dementia, I do not want an enteral feeding tube’, their directive would state ‘In the event I have severe stage dementia, I leave it to my trusted husband to decide whether I should have an enteral feeding tube’. The clinician or whoever is helping the person complete their advance care plan then needs to ask the person what kinds of factors the trusted husband should or should not think about.
To guide this discussion of factors, a clinician should assess how much freedom or leeway a person would grant their trusted proxy over their advance care preferences and if they would grant them freedom, what factors should guide it. For example, a patient may say ‘If I reach the point where I cannot recognize my family, then I don’t want to be kept alive. If I get pneumonia or something, let me go. Period’. A useful probe to this statement is how much leeway or freedom the patient would give to their proxy over this decision to do the opposite. For example, this same patient may say ‘Well, if I’m happy and laughing and enjoying life, it’s worth taking some chances, but that’s really the key – how much I am enjoying life’. This example illustrates how the person modified their initial strong preference against treatment under certain clinical circumstances to include factors that their proxy should take into consideration.
A third limitation is that a dementia patient’s impairments in abstract reasoning, planning and insight may hinder their decision-making abilities to the degree that they lack the capacity to execute an advance directive. A useful strategy for the clinician is to present a patient with a description of a person in the profound stage of dementia and asks the patient ‘Suppose that you were in this condition. How would you want to be cared for?’ The patient’s answer is then a starting point both to assess their ability to make decisions about their future care and for a discussion about their goals and values of care.
Sources and Additional Information:
Clinical Diagnosis and Management for Alzheimer’s Disease by Serge Gautheir