Purpose
To provide a procedural mechanism whereby ethically and medically appropriate health care decisions can be made for patients who lack health care decision-making capacity and for whom no surrogate exists. Decisions made without clear knowledge of the patient’s specific treatment preferences must be made in the patient’s best interest, considering the patient’s personal history, values and beliefs to the extent known. Hence, appropriate health care decisions include both the provision of appropriate medical intervention and the avoidance of interventions that are not beneficial and/or are burdensome to the patient, or intervention that is medically ineffective or contrary to generally-accepted health care standards. (See General Introduction to the Ethical and Religious Directives (ERDs).
Definitions
- Health care decision making capacity – “…a person’s ability to understand the nature and consequences of a decision and to make and communicate a decision and includes in the case of proposed health care, the ability to understand its significant benefits, risks, and alternatives.” (Cal. Probate Code 4609)
- Health care decision – a decision by a patient or the patient’s agent, conservator, or surrogate regarding the patient’s health care, including the following: (a) selection and discharge of health care providers and institutions, (b) approval or disapproval of diagnostic tests, surgical procedures, and programs of medication, (c) directions to provide, withhold or withdraw artificial nutrition and hydration and all other forms of health care, including cardiopulmonary resuscitation. ( Probate Code § 4617)
- Incapacitated patient without a surrogate – a patient who lacks health care decision making capacity and who also lacks a surrogate decision-maker and meets all of the following conditions:
- The patient has been determined by the primary physician (with assistance from appropriate consulting physicians as necessary) to lack capacity to make health care decisions.
- No agent, conservator, or surrogate has been designated to act on behalf of the patient. (For definitions, see Cal. Probate Code § 4607, 4613).
- There is no individual health care directive or instruction, e.g., a valid advance directive or POLST, in the patient’s medical record or otherwise available that would eliminate the need for the application of this policy.
- No family member or other surrogate decision-maker can be identified who is reasonably available and who is capable and willing to serve. Efforts made by the social worker and others to establish whether or not a surrogate is reasonably available should be diligent and, at a minimum, should include examining the personal effects, if any, accompanying the patient, as well as reviewing the patient’s medical records and any verbal or written reports made by emergency medical personnel or the police. When indicated, these efforts must include contacting the facility from which the patient was referred, and contacting public health or social service agencies known to have provided treatment for the patient.
- Surrogate decision maker – An individual who has the capacity and is willing to make medical decisions for the patient. An adult family member or an individual with a close personal relationship to the patient can serve as a surrogate. There must be medical record documentation (such as by a social worker) that this surrogate has been interviewed and satisfies the criteria to serve as a surrogate decision-maker.
Background
- This policy is now the community standard in Santa Clara County for the most appropriate manner in which to make medical decisions on behalf of incapacitated patients who lack surrogate decision-makers. Despite their incapacity, such patients are entitled to have appropriate medical decisions made on their behalf and to have these decisions made in their best interest, respecting their wishes and values as much as these can be known. “The inherent dignity of the human person must be respected and protected regardless of the nature of the person’s health problem or social status. The respect for human dignity extends to all persons who are served by Catholic health care” (ERD # 23). The procedures set forth here are intended to meet these goals. This policy is considered necessary since no clear-cut legal guidelines exist that cover these circumstances. As a consequence, incapacitated patients who are also unrepresented tend to be managed inconsistently and on an ad hoc basis, which often confounds and delays medical decisions. This policy and its procedural protections are considered especially important for the irreversible decision to forgo life-sustaining intervention for unrepresented patients.
- This policy supersedes the medically ineffective intervention policy for all patients who lack both decision making capacity and a legal surrogate.
- This policy is procedural in nature and applies to all medical decisions for the designated patients for whom informed consent is usually required, including those to withhold or withdraw life-sustaining medical interventions.
- This policy is meant to support the Hospital’s underlying consent policy.
- Goals to be achieved
- To make and effect health care decisions in accordance with a patient’s best interest, taking into consideration the patient’s personal values and wishes to the extent that these are known.
- To establish uniform procedures to implement appropriate health care decisions for unrepresented incapacitated patients. Appropriate health care decisions include both the provision of needed and wanted medical intervention and the avoidance of medically ineffective interventions or interventions that are excessively burdensome. Appropriate health care decisions are based on sound medical advice and made in the patient’s best interest without the influence of material conflicts of interest.
- Circumstances where this policy is not applicable or is applied only with additional considerations
- This policy does not apply in emergency medical situations. The patient's consent is "presumed," rather than obtained, in emergency situations when the patient is unconscious, incapacitated or incompetent and no surrogate decision-maker is available.
- This policy does not apply in situations where, using sound medical judgment, a physician makes a bedside decision to cease attempts at cardio-pulmonary resuscitation of a patient.
- If the Public Guardian is appointed, the Public Guardian must be involved in medical decision-making under this policy. Medical circumstances will dictate when medical providers can delay decision-making in order to include the Public Guardian.
- This policy does not apply to persons less than 18 years old.
- Hospital legal counsel must be consulted if a decision to withdraw intervention is likely to result in the death of the patient and the situation arises in any of the following circumstances:
- The patient’s condition is the result of an injury that appears to have been inflicted by a criminal act
- The patient’s condition was created or aggravated by a medical accident
- The patient is pregnant
- The patient is a parent with sole custody of responsibility for support of a minor child
- Application: Except to the extent that it is medically relevant, the patient’s age, sex, religion, race, color, ethnicity, disability, marital status, sexual orientation, social status, or any other category prohibited by law, the ability to pay for health care services, or avoidance of burden to family or to society shall not be used to bias considerations about the appropriateness of any health care decision under this policy, consistent with the Hospital’s non-discrimination policy.
Policy
If, after exhaustive effort, no legal surrogate decision-maker can be located, medical decisions on behalf of incapacitated patients will be made using the following procedures.
- For medical decisions for which informed consent is required:
- Bioethics Committee consult is required during which advice to the health care team about the process of medical decision-making will be provided. At the conclusion of the consult, the Bioethics Committee Chair may refer the matter to a Sub-Committee (described below) that will act as the surrogate decision-maker.
- For medical decisions referred to a Sub-Committee of the Bioethics Committee including recommendations to withhold or withdraw life-sustaining intervention(s):
- When the decision involves withholding or withdrawing medically ineffective intervention(s), the medical team will obtain a second opinion about the recommendation from an independent physician with relevant medical qualifications.
- The Chair of the Bioethics Committee will appoint a Sub-Committee from among the membership of the Bioethics Committee to act as surrogate decision-maker for the patient and to review the proposed decision to ensure that the decision, including to withhold or withdraw ineffective life-sustaining intervention(s), is based on sound medical advice and made in conformity with this policy.
- Composition of Sub-Committee: The Sub-Committee will consist of multidisciplinary medical personnel capable of independently understanding the medical consequences of the health care decision. At least one non-medical member of the Bioethics Committee will be named to the Sub-Committee. All members will be asked whether they have any material conflict of interest, real or apparent, in the matter and, if so, will be excused from the Sub-Committee. The composition of the Sub-Committee should include, but not be limited to, a physician, an ethics consultant, a social worker, a chaplain and palliative care. Representatives of the patient’s cultural, ethnic, and/or religious communities should be members of the Sub-Committee whenever feasible and appropriate.
- Conduct and Standard of Review by Sub-Committee: The Sub-Committee, acting as surrogate decision-maker for the patient, will advocate on behalf of the patient. The Sub-Committee will interview the relevant medical providers and anyone else closely involved with the patient. The Sub-Committee will inquire about the effort made to identify a surrogate, the process to determine the decision-making capacity of the patient, the attempts made to learn about the patient’s values and preferences, the medical basis for the conclusion that medical intervention should be provided or withheld/withdrawn, and about the other available medical options and their likely outcomes. The Sub-Committee will determine appropriate goals of care by weighing the following considerations:
- Patient’s previously expressed wishes, if any and to the extent known
- Relief of pain and suffering
- Preservation or improvement of function
- Recovery of cognitive function
- Quality and extent of life sustained from the perspective of the patient
- Degree of intrusiveness, risk, and/or discomfort of continued medical intervention
- Cultural and/or religious beliefs, to the extent known
- Decision-making by the Sub-Committee: The Sub-Committee will assure itself that there were adequate safeguards to confirm the accuracy of the diagnosis and that the medical decision was made in good faith, was based on sound medical advice, is in the patient’s best interest, and takes into account the patient’s values, to the extent known. The Sub-Committee can ask for further medical opinions to verify the primary conclusions. The Sub-Committee can also ask that further investigations be made about the availability of surrogates, the patient’s treatment preferences, or other relevant matters. After this investigation is completed, the Sub-Committee will then make an independent finding about the proposed decision. This decision making process will ordinarily occur during a formal Sub-Committee meeting, which the attending physician or his/her designee must attend.
- Composition of Sub-Committee: The Sub-Committee will consist of multidisciplinary medical personnel capable of independently understanding the medical consequences of the health care decision. At least one non-medical member of the Bioethics Committee will be named to the Sub-Committee. All members will be asked whether they have any material conflict of interest, real or apparent, in the matter and, if so, will be excused from the Sub-Committee. The composition of the Sub-Committee should include, but not be limited to, a physician, an ethics consultant, a social worker, a chaplain and palliative care. Representatives of the patient’s cultural, ethnic, and/or religious communities should be members of the Sub-Committee whenever feasible and appropriate.
- Subsequent Action: If the Sub-Committee is in general agreement about the proposed decision, the decision can be implemented by the primary treating physician. If the Sub-Committee cannot reach a general agreement or if it disapproves of the proposed medical decision, the Chief of Staff or his/her designee will be included in the decision-making process to assist in resolving any disagreements. In any case when a medical decision to withhold or withdraw life-sustaining intervention is implemented under this policy, the Chief of Staff must approve of the decision. Irresolvable conflicts can be referred to court for legal resolution with the understanding that a legal remedy should only be sought in extreme circumstances. Any implementation of a decision to withhold or withdraw life-sustaining medical intervention will be the responsibility of the primary treating physician. In all cases, appropriate pain relief and palliative care will be provided.
Record Keeping
Signed, dated, and timed medical record progress notes will be written for the following:
- The findings used to conclude that the patient lacks medical decision-making capacity,
- The finding that there is no advance health care directive, no family or friend to serve as surrogate decision-maker, no conservator or guardian, and no medical instructions, in the patient’s medical record or otherwise available,
- The attempts made to locate surrogate decision-makers and/or family members and the results of those attempts,
- Any interviews of individuals with a close personal relationship to the patient who are willing to serve as surrogate and facts to substantiate their qualifications under this policy,
- The medical basis for the decision to treat the patient and/or the decision to withhold or withdraw life-sustaining intervention and the likely outcome if the decision is implemented, and
- Any findings and conclusions by the ethics consultant, the appointed Bioethics Sub-Committee, or the Chief of Staff.
Retrospective Review
Every case in which this policy is used will be reviewed by the full Bioethics Committee at its next scheduled meeting or sooner if requested.
References
“Health Care Decisions for Patients Without Surrogates Model Policy.” Santa Clara County Medical Association Bioethics Committee. February, 2001.