Step 1: Introduce the Topic
Research shows that most patients believe that it is the physician's responsibility to start advance care planning and will wait for the physician's initiative. Advance care planning is most easily accomplished during stable health, since changes often require a period for adjustment before the patient will have stable goals again.
In the face of life-threatening illness or other significant change in health status, advance care planning becomes even more necessary. Try to find a time when there is as much stability and adjustment to the new illness circumstances as possible.
Sometimes the most difficult part of the advance care planning process is the introduction of the topic. Physicians often have a number of concerns that make them reluctant to do so. Some may be concerned that the subject of advance care planning will frighten the patient or send the wrong message. Others may be uncertain about the most effective approach to use. In fact, most patients welcome the opportunity to discuss their preferences with their physician, and physicians who routinely engage in the process find it helpful and not too time-consuming.
Although some patients will be more likely to need advance care planning than others, healthy people who experience an unexpected illness, such as major trauma, can suddenly be the patients most in need of advance directives. Whenever possible, physicians routinely should initiate the advance care planning process with every adult patient in their practice, regardless of age or current state of health. An outpatient office visit or other nonthreatening setting is ideal.
For children with a chronic illness, the optimal timing of advance care planning will vary. At a minimum, the discussion should take place after a relapse of disease, or at the time of significant complications, but before the child is in a state of crisis.
When introducing the topic, inquire how familiar the patient is with advance care planning. Some patients may already have advance directives in the form of a living will or durable power of attorney for health care. If this is the case, review the documents and amend them if appropriate. An advisory medical directive can be used to amend existing statutory documents.
Before beginning the process, be prepared to explain the purpose and nature of the process that you recommend using. You may have literature that you would like the patient to read. If you are using a validated worksheet, give it to the patient to look over before the next discussion. Explain the roles of other family members or a proxy. If appropriate, introduce other members of the health care team who will be involved in the process.
Although most patients will welcome the opportunity to discuss these matters, be aware of the patient's comfort level during the introduction of the topic. If a patient (or parent if the patient is a child) does not seem comfortable talking with you, be supportive and provide information, but do not force the conversation. It may happen later when the patient is ready.
As patients frequently wish to minimize the decision-making burden for family, suggest that the patient involve family members, friends, and even members of the community to explore how best to manage potential burdens. Ask the patient to identify a possible proxy decision maker, who might act on his or her behalf, to be involved in subsequent conversations. The best proxy decision maker is not always a family member. Sometimes the decisions are too difficult for people close to the patient, who may be overly influenced by their attachment or by burdens of care. Whether close or not so close, the proxy should be someone whom the patient trusts and who would be willing and able to represent the patient's wishes. Encourage the patient to bring that person, or persons, to the next meeting and book a time to follow up.
Step 2: Engage in Structured Discussions
A critical success factor for advance care planning is the ability to structure discussions with the patient that convey the information patients need and to elicit relevant preferences to determine their advance directives. To prevent any misunderstanding, remind the patient that it is the goal of advance care planning to plan for the potential loss of his or her capacity to make decisions, temporarily or permanently. Convey commitment to follow the patient's wishes and to protect the patient from unwanted treatment or undertreatment, and convey intent to help plan for any caretaking needs of the patient's family.
Role of the Proxy
Involve the potential proxy decision maker in the discussions and planning so that he or she can have a thorough and explicit understanding of the patient's wishes. Usually, the appropriate role for the proxy during the initial discussions is to listen, perhaps to take notes, and to ask questions for clarification. A joint meeting involving the patient, physician, and proxy to ensure common understanding can be invaluable if the proxy and physician are later called on to collaborate in decision making.
As part of the advance care planning process, the patient should specify the role he or she would like the proxy to assume if the patient is incapacitated. Proxies may try to implement specific treatment choices, they may try to decide according to the patient's best interests, or they may decide by taking into consideration the interests of all parties that the patient cares about in a form of substituted judgment. Although these possibilities often coincide, they may not, and it can be very helpful for the patient to decide which standard is most important.
In all cases, the proxy will need to work with the physician and, in general, should have the same participation in decisions that the patient would have had. Most commonly, the proxy uses a blend of standardshis or her own judgment based on the situation and what he or she knows about the patient's wishes. This allows for unexpected factors that could not be anticipated during the advance care planning process.
Patient and Proxy Education
At the core of advance care planning is the empowerment and preparedness of the patient and proxy. Both usually require some education, time for reflection, and discussion. To make informed choices, the patient must understand the meaning of the various clinical scenarios under discussion, as well as the benefits and drawbacks of the various treatment options. The discussion should provide insight into the types of clinical scenarios that might arise and the types of decisions that proxies most commonly face.
Define key medical terms using words the patient and proxy can understand. Explain the benefits and burdens of various treatment options (eg, life support on a ventilator may be needed for a short time only if the underlying problem is reversible). Remind them that any intervention can be refused or stopped if it is not meeting overall treatment goals. Because recovery cannot always be predicted, help patients to consider situations involving uncertainty, incomplete recovery, or even death.
Elicit the Patient's Values and Goals
Develop an understanding of the patient's values and goals related to health and illness. For pediatric patients, involve them to the level at which they are comfortable and work with the parents or guardians. There are a number of ways to facilitate this part of the discussion. Ask about past experiencesthe patient's own or those of other people the patient knows. Describe possible scenarios and ask the patient what he or she would want in such a situation.
As a range of clinical situations is reviewed with the patient, it will be possible to get a sense of where thresholds exist for withdrawal or withholding of care. Help the patient to articulate his or her own general principles, values, and goals for care in given situations and specific treatment wishes. Consider asking the patient if he or she wants to write down in a letter to the physician how such things should be handled.
Use a Validated Advisory Document
To guide the discussion and capture patient preferences, consider using a worksheet or other carefully developed and studied tool. Many people find that, by using a worksheet, the discussion with the patient readily identifies the patient's values and attitudes regarding health and medical care across a range of medical situations, possible goals, and treatment choices. By going through various scenarios and options, the patient's personal threshold for use or nonuse of interventions can become clearer. Proxy decision makers can be identified and their roles defined.
Ensure that the worksheet includes a range of potential scenarios that patients should consider. It should elicit the patient's values and goals related to health and medical care in general terms and should include the most common lifesaving interventions. If a patient already has a life-threatening condition, the conversation may be more focused on specific scenarios and treatment issues. For example, a patient with end-stage cardiomyopathy needs to consider the issues of cardiopulmonary resuscitation and the role of intensive care units. The patient with end-stage renal disease must consider dialysis. The patient with advanced acquired immunodeficiency syndrome needs to consider dementia and respiratory failure.
A number of validated worksheets are available from which to choose.7-9 They provide a consistent approach, are easy to use, and reduce the chance that important information will be left out or framed in a biased way; the preferences they elicit tend to be reliable and durable reflections of the patient's wishes. Once they are complete, worksheets can serve as a resource that the patient, proxy, and family members take home. They may also be able to serve as a formal advisory document.
Step 3: Document Patient Preferences
Formalize the Directives
Once the patient has made some decisions, to avoid the possibility of a directive that cannot be implemented, it is crucial for the physician to review the advance directives with the patient and proxy. Check for, and help to correct, any inconsistencies and misunderstandings. Make sure that the directives provide the type of information needed to make clinical decisions.
After a final review is complete, ask the patient to confirm his or her wishes by signing the directives. Although any statement of a patient's wisheswritten or verbalcan be considered an advance directive and should be respected by physicians, a formal written document signed by the patient can avoid ambiguity.
Enter Directives Into the Medical Record
Once the directives have been reviewed and accepted, the physician must document them formally in the patient's medical record. When a validated worksheet has been used to structure the planning discussion, the completed, finalized, and signed worksheet can itself be used as the entry in the medical record.
In the absence of a validated worksheet, the physician should describe the patient's wishes in a written document and ask the patient to review and amend it as appropriate. Once everyone is satisfied, have the patient sign the document and enter it into the medical record. It is also useful for the physician and proxy to sign the advance directive and provide their location information. This offers reassurance to the patient and helps to ensure the physician's and proxy's involvement in eventual decision making.
Recommended Statutory Documents
For added protection, patients should be encouraged to complete one or more statutory documents (eg, living will or durable power of attorney for health care) that comply with state statutes. Physicians should familiarize themselves with the specific advance directive statutory requirements of their state. They can do this by checking with their hospital's legal counsel, their state attorney general's office, or their local medical society.
Distribute the Directives
It is important to have these records wherever the patient may receive care. Place them into a central repository, such as a hospital or a regional or national center. Provide copies to the patient, proxy decision maker, family members, and all health care providers as appropriate. Use wallet cards to help ensure that information is available when it is needed.
Include Advance Directives in the Plan of Care
Once preferences have been established, the physician may need to change the plan of care and put certain things in place to ensure that the patient's wishes can be followed. For patients who may wish to remain at home and never be taken to an emergency department or hospitalized again, appropriate alternative arrangements, including referral to a home hospice agency, provision of appropriate medications, and instructions detailing how to handle symptoms and crises, may be needed. Practical suggestions may be helpful. Consider posting telephone numbers by the home telephone to call in an emergency (eg, the hospice nurse on call) or numbers not to call (eg, 911).
Step 4: Review and Update the Directive
It is important to revisit the subject of advance care planning on a periodic basis to review the patient's preferences and to update the documents. Major life events, such as illness, marriage, the birth of a child, or the death of a loved one, may affect a person's attitude toward his or her health care and/or end-of-life care.
Any changes in preferences warrant discussion to allow the patient to reassess and to ensure that the physician and proxy decision maker fully understand the new wishes. Changes in preferences should be documented, and existing documents should be updated and shared appropriately.
Step 5: Apply Directives to Actual Circumstances
When patients become incapacitated, the application of previous wishes to real circumstances can be challenging. The following guidelines may be helpful to ensure that a patient's advance directives are followed as closely as possible.
Most advance directives go into effect when the patient is no longer able to direct his or her own medical care. Learn to recognize when a patient becomes incapable of making decisions. Although situations where the patient is unresponsive are obvious, if the patient has some ability to respond, the physician first must determine the patient's capacity to make decisions.
Never assume an advance directive's content without actually reading the document. Do not take for granted that patients who have living wills want treatment withheld. Some people indicate within their living will that they want all measures taken to prolong their life.
Advance directives should be interpreted in view of the clinical facts of the case. Validated documents are likely to be more useful than short statements or statutory documents. No matter how thorough they are, advance directives cannot anticipate all possible circumstances. The proxy and the physician may need to extrapolate from the scenarios described in the advance directive to the current situation, and to make an educated guess as to what the patient would want if he or she were able to speak for himself or herself.
Whenever significant interpretation is necessary, the physician should consult the patient's proxy. Sometimes the physician and/or proxy may believe that a patient would have indeed wanted something other than what is reflected by a strict reading of the advance directive. In this case, they should work together to reach consensus.
Certain patterns of decisions have high predictability and follow logic. For instance, a decline of less invasive interventions has been shown to predict decline of more invasive interventions. Acceptance of more invasive interventions predicts acceptance of less invasive interventions. If a patient has indicated that he or she would like intervention in a poor-prognosis scenario, there is a high probability that the patient would also accept intervention in a better-prognosis situation. Likewise, if the patient has indicated that he or she would decline intervention in a better-prognosis scenario, there is a high probability that he or she would also decline if the prognosis were poor.
If disagreements cannot be resolved, assistance should be sought from an ethics consultant or committee.
COMMON PITFALLS OF ADVANCE CARE PLANNING
Planning other issues that face patients at the end of their lives is critical if their needs and expectations are to be respected by health care professionals and family members who will survive them. Although it would be ideal if all patients and families prepared for death well in advance of the final hours of their lives, most patients with advanced illnesses and their families have not discussed or prepared for their death.
As patients approach the last hours of their lives, they have a last chance to finish their business, create final memories, give final gifts, and say their good-byes. If appropriately assisted, considerable planning can be accomplished around many of these issues.
The 5-step model for eliciting, documenting, and following advance directives can be used to guide these decision-making processes and to document patient choices. As these important tasks are generally more than individual physicians can handle, other members of the interdisciplinary team can help patients and families complete their business and get their affairs in order.
In preparing for death, it is important to understand the perspective and wishes of all who are present, ie, the patient, the family, and the caregivers. Personal expectations, agendas, fears and phobias and acceptable setting(s) for care need to be clear, since any one person may alter the course of care unexpectedly and may interfere with the patient's wishes if such are not clearly known. Personal, cultural, and religious values, beliefs, and practices need to be anticipated and respected, as missed rites or rituals or errors made by unknowing caregivers may have grievous consequences in the eyes of the patient or family members. Identification and acknowledgment that some family members have a need to give care and others do not will help to allow each to participate as closely as makes him or her comfortable.
Advance Practical Planning
Many patients will choose to get their financial and legal affairs in order, give gifts, and plan for bequests, organ donation, autopsy, burial or cremation, their funeral or memorial services, and guardianship of their children as they finish their business. Some patients will even want to give family members permission to build new lives after they die.
Choice of Caregivers
The choice of caregivers for each patient is crucial as vulnerability increases. Patients may or may not want family members to care for them. Family members may or may not be able to assume responsibilities for caring and ideally should have the opportunity to be family first, and caregivers only if they and the patient agree to the role. All caregivers need to have the opportunity to change their role if they feel the stress is too much, or if they are not getting enough of a chance to finish their personal business with the patient.
Choice of Setting
The choice of care setting for the last hours of the patient's life should be as acceptable as possible to the patient, the family, and all caregivers. Each setting will carry benefits and burdens. Whatever the choice, the setting should permit family members to remain with the patient as much as they want, and should provide them with opportunities for privacy and intimacy. Although dying at home may be the wish of many patients, such a choice may expose family members to undue burden or compromise their careers, personal economic resources, or health. If the number of able caregivers and personal resources is limited, or if family members are afraid of ghosts and would not be able to live on in their home afterward, care and death in the home may not be the best choice. An alternate inpatient setting may be a hospice or palliative care facility, a skilled nursing facility, or even an acute care facility. Depending on the resources that are locally available and whether the staff is skilled in this kind of care, these alternative settings may lead to a far better outcome.