Clinical Ethics and Law

Disagreement among surrogate decision-makers and with advance directive/end of life/futility:
Case 1 Discussion

The ethical and legal parameters in Case 1 are informed consent, surrogate decision-making and the patient's ability to direct her care - expressed in law as a liberty or privacy right and in clinical ethics as respect for patient autonomy. While the details of each case will determine the advice provided, the difficult issues raised in Case 1 prompt consideration of a number clinical ethics and legal issues. 

Specific clinical ethics and legal issues: 

The patient is unable to provide informed consent for medical care. Informed consent means making a medical treatment choice and includes the choice of non-treatment. What is known about the patient's wishes for continued medical treatment under her current circumstances?

Her providers, referencing intuitional policy, thought ventilator support and CPR were medically futile. A provider’s determination of medical futility means that treatment is highly unlikely to provide overall benefit to the patient. Such determinations are case-specific, and should be thoroughly discussed with surrogate decision-makers. While providers may not be obligated to provide medically futile interventions, depending upon circumstances, the patient may be transferred to another facility.  Institutional policies are crafted to provide guidance to providers within the context of clinical ethics and the relevant laws and should guide decision-making in this area. In Washington State for example, decisions to withdraw or withhold medical treatment are partially governed by the Washington Natural Death Act which currently requires that the patient be in a permanent unconscious or terminal condition. 21 There are other circumstances in which a surrogate will be able to make choices on behalf of the patient.  

The patient's advance directive is strong evidence and significant in determining what the patient would want for substituted judgment. Since the patient's husband (her legal surrogate) only made vague statements as to why he thought she would want continued care under these circumstances and the husband's perspective was contradicted by their adult children,  it appears the situation requires further communication efforts, e.g., patient care conference, clinical ethics consultation, potential consult with institutional risk manager and/or attorney. The services of a hospital chaplain may also be helpful since the husband had indicated that his religious beliefs played some role in his perspective of his wife’s situation.  

If these additional communication efforts fail to resolve the impasse, one possible legal/risk management approach would be to consider pursuing withdrawal of life support after multiple steps and ongoing consultation.  Possible actions might include the following. 

The content of the patient's advance directive should be verified to be consistent with a decision to forego further life-sustaining measures. Those persons who were present when she prepared and signed the document should be contacted to gather further information about the patient's intentions.

The requisite clinical determination(s)  ("terminal" or "permanent unconscious" conditions) to activate the patient's advance directive should be confirmed  and documented in the patient's chart.

Consensus among the medical team should be confirmed regarding: the clinical determinations; the appropriateness of withdrawing life support as in the patient's best interests; and, that withdrawal is consistent with her advance directive. The applicability of the institutional futility or withholding and withdrawal policy should be reviewed and, if applicable, documented in the patient’s chart. 

A patient care conference with the family members should be scheduled to review the patient's prognosis with the family once again. Assuming that the medical team is in consensus about withdrawal, they can communicate their decision to withdraw care at a specific future date and time. With this advance notice of planned future action, the patient's husband is provided an opportunity to seek judicial review or arrange for a transfer of care to another medical facility before the withdrawal of care. At any time throughout this process, it may be possible to break the stalemate of the patient's situation and allow a resolution.

It is anticipated that in such a complex medical and emotionally charged circumstance that there would be ongoing communications and multiple opportunities with hospital staff, care providers,  and the patient's surrogate and immediate family members about what the patient would want and or what is in her best interest. This situation underscores the importance of communication with the surrogate the throughout the resolution process. A clinical ethicist or palliative care consultant can assist in this process.

Surrogate decision-maker with potential conflict of interest:
Case 2 Discussion

Some key clinical ethics and legal issues raised by Case 2 are informed consent and surrogate decision-making. While the details of each case will determine the advice provided, this case raises a number of issues.

Specific clinical ethics and legal issues: 

As mentioned above,23 implied consent is permitted by law for provision of "emergency" medical treatment. However the relevant state’s law does not define the term “emergency.”24 Each institution should have a policy that defines emergency in accordance with state law and lays out institutional documentation requirements so that providers are guided in their decision-making.25  Thus, if a medical emergency exists and implied consent is relied on by the health care providers, it should be documented in the patient's medical record in accordance with legal and institutional standards.

The patient may have provided her own consent to treatment either at the time of her admission or earlier in her hospitalization. At that time, she may have expressed her ongoing wishes for care. The patient's own previous statements/consent may therefore be the basis for continued consent for her ongoing care. If there is a need for informed consent for a new treatment decision on behalf of the patient, the patient's previously expressed wishes may still be relevant to her legally authorized surrogate decision-maker and her treatment plan.

If the patient already filed for divorce, it is likely that there is a temporary court order in effect and this order may affirmatively remove the patient's estranged husband from making medical decisions for her. Also, divorce paperwork may have mutual restraining orders which prevent both spouses from contacting each other. The patient's parents should be asked to provide the name of her divorce attorney. Hospital staff may contact the patient’s attorney to request information and to obtain copies of the relevant legal papers, which can then be placed in the legal section of the patient's medical record. Obtaining information is not a violation of patient confidentiality. It is also permissible for an attorney to provide information that is contained in public records, such as documents filed with a court.  With the husband thus removed as her surrogate decision-maker, it appears the patient's parents would become the highest level class of surrogate decision-maker and could provide informed consent for her care if the patient is unable to do so.

Even if the patient's husband remains as her legal surrogate decision-maker, his decisions on the patient's behalf are constrained by clinical ethics and legal standards. First, a surrogate is legally required to provide "substituted judgment" on behalf of the patient. This means that the surrogate must act in accordance with the patient's wishes. If substituted judgment isn't possible (i.e., unknown what the patient would want under the current medical circumstances), then the law requires the surrogate to act in the patient's "best interest." Since the medical team has significant input about what would medically be in the patient's best interest, a decision by a surrogate which doesn't adhere to this standard should not be automatically followed and may need to be reviewed by a clinical ethics consultant or committee, risk management, or legal counsel.

The patient's husband may be willing to waive his role as surrogate decision-maker. If this occurs, then he would agree to remove himself from the list of potential surrogate decision-makers and the next highest level surrogate decision-maker(s) would be contacted as necessary to provide informed consent for the patient.

Another option may be for the patient's parents to file in court to become the patient's legal guardians for health care decision-making

Minor patient/Jehovah’s Witness/non-treatment against medical advice:
Case 3 Discussion

The legal and clinical ethics parameters in Case 3 concern: (a) whether a minor can provide informed consent for her own treatment (which includes non-treatment) that may have fatal consequences; (b) what surrogate decision-making authority do parents have for a mature minor; and (c) the health care providers’ ability to accept non-treatment choices that greatly diminish the likelihood of successful treatment.  The patient's ability to direct her care is expressed in law as a liberty or privacy right and in clinical ethics as respect for patient autonomy. Case 3 implicates a number of clinical ethics and legal issues.

Specific clinical ethics and legal issues:

The 17 year old patient is a minor under state law. 26 A key question in this case is whether or not the patient should be treated as capable of providing her own informed consent. The treatment team held a series of meetings with the patient, her parents, and her younger sibling to discuss the patient’s diagnosis, its implications and treatment availability. The patient was also separately counseled by medical staff to ascertain whether she was freely and voluntarily expressing her preferences or if she may have felt pressured by her family or church members. 

Jehovah’s Witnesses have beliefs which forbid the acceptance of blood transfusions and blood products due to an interpretation of certain biblical text. With the exception of this treatment modality, Jehovah’s Witnesses are generally willing to accept medical treatment. This belief is not generally shared by others in our society. As such, this belief may appear unacceptable and irrational to others, including health care providers. Even if the patient is deemed competent to make medical treatment decisions, if the patient rejects potentially life-saving treatment based on an uncommon belief, this may cause distress to the patient’s health care providers who may view such an act as not being in the patient’s best interest. 

The patient was capable of articulating her personal beliefs and preferences and was believed to be mature by the hospital staff. In some instances, physicians have documented clinical observations that support a conclusion that the minor was mature and capable of making medical decisions in light of the nature of the condition and treatment choices... This type of clinical determination of ability to provide mature reasoned decision-making for health care has been recognized in state law, e.g., in Washington State. The court has identified certain factors as relevant in considering whether a minor is “emancipated” including: age, maturity, intelligence, training, experience, economic independence, and freedom from parental control.27 Additional state laws have expanded the ability of minors to provide consent for particular types of health care, such as abortion, birth control, sexually transmitted diseases and mental health treatment. 28

In this particular situation, since the refusal of the blood transfusion had potential fatal consequences, from an institutional risk management perspective, the option of a court review and judicial determination of emancipation was a preferred choice. The hospital’s legal counsel initiated a legal process to allow the patient and her family to request the local superior court for a court determination of emancipation so that the patient would be deemed an adult for making her own treatment choices. 

In this particular case, ultimately a court proceeding was held at the hospital. The patient, her parents, her sibling, church members of the family, the church’s attorney, the treating physician, the hospital’s attorney, and the judge were present. Testimony was taken and the judge also spoke with the patient in private (the judge later gave a summary of the conversation for the record). There was also evidence in the form of an affidavit signed by Children’s Protective Services that this would not be a situation in which that state agency would file a petition and seek a court order for treatment of the minor. The physician supported that the patient was emancipated and should be permitted to make her own informed consent. The court entered an order of emancipation. 

The effect of this court order of emancipation put the minor patient on equal consent footing as an adult. Emancipation, in and of itself, does not alter the requirement that the patient provide informed consent, i.e. be able to understand and weigh the risks and benefits of the recommended medical treatment and other treatment options, including non-treatment.

While this particular set of facts resolved with minimal or no conflict, other situations involving patients with differing social or religious beliefs regarding specific treatments may have greater conflict.