To promote the concept of advance care planning as a normal component of good, routine practice, discussions should be initiated with healthy adults as well as the sick and elderly. However, the content of each discussion will be dependent on the patient's age, health condition, social context and core values and beliefs. Additionally, the content of the discussions must include realistic scenarios for the individual to consider, in essence, to assist them in reflecting on what actually may happen and avoid the potential confusion and irrelevance in discussing unlikely medical complications. The use of scenarios also assists the person, surrogate and health professional to identify what the individual's "threshold" for intervention is, i.e. when their choice for intervention changes to non-intervention. This type of information is particularly useful to provide patterns of decisions when and if the surrogate and health professional have to make decisions for an incapacitated patient. For example, if a person has expressed a decline of non-invasive intervention, one can predict he would also decline more invasive interventions. The choices of scenarios discussed vary with the patient population and individual requests.
Different strategies are needed with the following groups:
It should be stressed that, for healthy adults, the purpose of advance care planning discussions is for circumstances where illness or injury is serious, irreversible and the person is not able to make his own decisions. The following skills should be included in advance care planning discussions for the healthy adult:
1. Determine who the individual would want to make health decisions if they were unable to speak for themselves. The designation of a surrogate decision-maker is an important advance care planning issue that should be discussed and documented. Then, even in the absence of other instructions, an appropriate decision-maker has been identified.
2. Determine what the individuals' goals for medical care would be if they permanently lost their ability to know who they were, where they were, and who they were with. Would they want aggressive treatment to sustain their life, or would they want the primary focus to be comfort?
3. Determine if the individual has any religious, cultural or personal beliefs that would influence end-of-life treatment preferences?
While many of us would chose to die suddenly and avoid end-of-life treatment decisions, most will die after a long history of chronic illness, interjected with periods of increased symptoms and gradual loss of function. This slow trajectory of illness allow individuals to make their own choices, although most do not quickly reach clearly formed preferences about end of life. Opening the door to discussion, addressing barriers to information, reflection and discussion and gently returning to the topic is a process that may take months or years. Each episode of exacerbation provides an opportunity to move the patient slowly along in the process, but these discussions will not always occur unless they are started by a health professional. Advance care planning facilitation skills for this patient population include:
1. Begin advance care planning discussions slowly and over time. Initially, these conversations can be a time to explore attitudes without focusing on stopping treatment e.g. "I know that many patients have concerns about controlling the use of a medical treatment if things got worse. Are there issues of concerns you want to talk about with me?"
2. Provide the patient with scenario's on how his particular disease is likely to progress and what treatment decisions he is likely to face in the future. What types of conditions would be worse than death? For example:
- Cancer patients are more likely to need to make decisions revolving around pain management and CPR.
- Patients with lung and neuro-muscular diseases will need to discuss decisions related to intubation and mechanical ventilation.
- Cardiac patients need to decide if CPR will be performed if their heart stops.
- Patients with chronic renal failure dependent upon dialysis need to consider if dialysis should continue or stop if they suffer permanent, serious neurological injury.
3. Provide the patient with outcome statistics if available and offer the options of time-limited trials of life-sustaining treatment.
4. Assist the patient and family in understanding the financial impact of treatment decisions and allow them to discuss this difficult reality openly.
5. If possible, provide an opportunity for the patient to discuss these issues with others who are experiencing the consequences of the illness.
When a person with an incurable illness reaches a point where death in the next 12 months would not be unexpected, a broader approach to advance care planning is important. The medical treatment issues that need to be discussed with this group include:
1. Discuss the issues related to resuscitation. Providing honest information on the unlikely chance of a good outcome will be important.
2. Determine the patient's perspective of a "good death." Consider the use of a structured interview for living well at the end of life.
3. Depending on the circumstances, discuss the options for withdrawing life-sustaining treatment such as artificial nutrition and hydration, antibiotics, routine tests and X-rays if they no longer serve the purpose for which they were intended.
4. Determine the specifics of what comfort care means to the patient, and under what set of criteria they want their symptoms controlled despite potential unintentional consequences.
5. Persons admitted to a long-term care facility are often coming to stay for the rest of their lives. While many are no longer capable of completing an advance directive, a few important decisions will need to be made by their surrogate decision-maker. Determine the following treatment decisions:
- CPR
- Use of antibiotics
- Hospitalization for life-prolonging measures
- Artificial nutrition and hydration
On a frequent basis, patients who were previously healthy or had only minor medical problems are faced with new, serious medical problems. If these patients have not already been engaged in advance care planning, the ideal process described in this manual may not be possible. Examples of patients in this category include those with newly diagnosed coronary artery disease or recent heart attack who need to have bypass surgery or those with resolving stroke who have a high risk for additional strokes.
In such circumstances it is important to determine if the person is well enough and capable to participate in even limited advance care planning. It is easy to avoid initiating the topic of advance care planning for fear that the topic will create additional anxiety and fear in a patient who is already suffering major changes in health status. While this fear is understandable, it may reflect the provider's attitudes, knowledge or skill, not the patient's desire and need. The following skills should be included in advance care planning discussions with this group of adults:
1. Assess the patient's understanding of their medical condition, their fears and concerns.
2. Determine whom the patient would want to make decisions for him in case he would be unable to speak for himself. The designation of a surrogate decision maker should be determined and documented. Then, even in the absence of a formal, advance directive, an appropriate decision-maker has been identified.
3. Include the designated surrogate decision-maker in any and all advance care planning discussions if possible.
4. Determine what type of outcome(s) would be desirable and undesirable for the patient. This discussion may focus on more specific scenarios that might be of concern given the patient's medical condition.
<<< Previous Next >>> [ Go Up ]