CASPER Exam Medical Ethics

Advance care planning

A process to help patients with decision-making capacity guide future health care decisions in the event that they become unable to participate directly in their care.

How is advance care planning different from advance directives?

Advanced care planning is the process of deciding future healthcare decisions and advanced directives are the formal written documents outlining these decisions.

Important topics

empathy/sympathy, cultural beliefs, autonomy, professionalism,

How should I advise a patient if he believes that some family members will disagree with his wishes?

The patient should be informed that the best way to prevent disagreements is to communicate with everyone ahead of time to let them know who has been chosen as a spokesperson and what kind of approach to health care he wants.

Power of attorney also known as

designated spokesperson or surrogate medical decision maker.

An elderly woman with chronic kidney disease told her daughters that if she ever ended up with dementia she wouldn't want to live like that. Years later she developed senile dementia and moved into a nursing home. Although she did not recognize family or friends, she enjoyed the company of others and the nursing home's cat. When her kidneys stopped functioning, staff at the nursing home expressed ambivalence about the value of kidney dialysis, yet asked her daughters whether their mother should be started on dialysis.

Should the daughters consider her previously stated wishes as an advance directive? What questions should health care providers and family members ask to clarify patient values and preferences so that they can be more easily applied in the future?

Advance Care Planning: Case 1 Discussion The daughters should consider her previously stated wishes as well as her current best interests. The daughters don't know how to proceed because they did not have the advance care planning conversation that clarified what their mother meant when she said that she wouldn't want to live with dementia. Was it the cognitive problems, the problems with self care, living in an institution, or the sense that living with dementia would not bring any joy? Without knowing this, the daughters are unprepared to step into her mother's shoes. However, asking the daughters to describe their mother and what brought her enjoyment and meaning throughout her life might help clarify the meaning of her words. Without really knowing their mother's wishes or feeling comfortable about what she would want as a goal of care under the present circumstances, the decision about dialysis is difficult. The daughters may choose to approve dialysis with the proviso that future triggers could lead to its discontinuation. For example, if her current quality of life deteriorates to the point where she is no longer experiencing joy, or if her behavior on dialysis requires early termination of the dialysis sessions, it may be appropriate to discontinue dialysis at that time.

A patient who has coronary artery disease and congestive heart failure shows his physician his advance directive that states he wants to receive cardiopulmonary resuscitation and other forms of life-sustaining treatment.

What should the doctor say to the patient in response to this?

Advance Care Planning: Case 2 Discussion The patient's expression of a preference should be explored to understand its origins. It is possible that the patient believes, based on television shows, that CPR is usually effective. If this is the case, the doctor should educate the patient about the near futility of CPR under these circumstances. However, the physician may learn that the patient has deeply held beliefs that suggest that not trying to live is tantamount to committing suicide which he perceives as morally wrong. In this situation, the doctor might want to ask the patient to explore this further with him and perhaps the chaplain.

A patient tells his family that he would never want to be "kept alive like a vegetable".

What is meant by the term "vegetable"?

The use of this expression is as vague as saying, "I don't want any heroics or extraordinary treatments" or, "Pull the plug if I'm ever in ...." If these types of comments in advance care planning discussions are not clarified, they are not helpful. For some patients being a "vegetable" means being in a coma, for others it means not being able to read. Gently discuss the patient's hopes, fears, and specific preferences in order to clarify the meaning of the term and the patient's preferences for end-of-life care.

Case 1: Jose is a 62-year-old man who just had a needle biopsy of the pancreas showing adenocarcinoma. You run into his brother in the hall, and he begs you not to tell Jose because the knowledge would kill him even faster. A family conference to discuss the prognosis is already scheduled for later that afternoon.

How should you handle this?

It is common for family members to want to protect their loved ones from bad news, but this is not always what the patient himself would want. It would be reasonable to tell Jose's brother that withholding information can be very bad because it creates a climate of dishonesty between the patient and family and medical caregivers; also, that the only way for Jose to have a voice in the decision making is for him to understand the medical situation. Ask Jose how he wants to handle the information in front of the rest of the family, and allow for some family discussion time for this matter.

In some cultures it is considered dangerous to talk about prognoses and to name illnesses (e.g., the Navajo). If you suspect a cultural issue it is better to find someone who knows how to handle the issue in a culturally sensitive way than to assume that you should simply refrain from providing medical information. For many invasive medical interventions which require a patient to critically weigh burdens and benefits, a patient will need to have some direct knowledge of their disease in Western terms in order to consider treatment options.

You are a 25-year-old female medical student doing a rotation in an HIV clinic. Sara is a 30-year-old woman with advanced HIV who dropped out of college after she found that she contracted HIV from her husband, who has hemophilia. In talking to Sara, it turns out you share a number of things--you are from the same part of Montana originally, also have young children, and like to cook. Later in the visit, when you suggest that she will need some blood tests, she gets very angry and says, "What would you know about this?"

What happened?

Although the protocol for breaking bad news is helpful, it doesn't cover everything. There are instances when you may provoke a reaction from a patient because you remind them of someone else--or, as in this case, themselves. In these instances it can be helpful to step back, get another perspective (perhaps from someone in clinic who has known Sara), and try not to take this reaction too personally--even though it is likely that Sara will know how to really bother you.

Informed consent

Before a health care provider delivers care, ethical and legal standards require that the patient provide informed consent. If the patient cannot provide informed consent, then, for most treatments, a legally authorized surrogate decision-maker may do so. In an emergency situation when the patient is not legally competent to give informed consent and no surrogate decision-maker is readily available, the law implies consent on behalf of the patient, assuming that the patient would consent to treatment if he or she were capable of doing so.

Information that must be conveyed to and consented to by the patient includes: the treatment's nature and character and anticipated results, alternative treatments (including non-treatment), and the potential risks and benefits of treatment and alternatives. The information must be presented in a form that the patient can comprehend (i.e., in a language and at a level which the patient can understand) and that the consent must be voluntary given.

Provider-patient communications: disclosing medical error.

Honest communication to patients by health care providers is an ethical imperative (a pinnacle of providing health). Excellent communication eliminates or reduces the likelihood of misunderstandings and conflict in the health care setting, and also may affect the likelihood that a patient will sue.

A 72 year old woman was admitted to the Neurological Intensive Care Unit following a cerebral hemorrhage which left her with severe brain damage and ventilator dependent. One year before this event, the patient and her husband had drawn up "living wills" with an attorney. She was diagnosed by her treating physician as being in a permanent unconscious condition. The patient's living will specified that the patient did not want ventilator support or other artificial life support in the event of a permanent unconscious condition or terminal condition.

The patient's husband is her legal next of kin and the person with surrogate decision-making authority. When the living will was discussed with him, he insisted that the patient had not intended for the document to be used in a situation like the present one. Further discussion with him revealed that he understood that the patient would not be able to recover any meaningful brain function but he argued that the living will did not apply because her condition was not imminently terminal. He further indicated that he did not consider his wife to be in a permanent unconscious condition. The immediate family members (the couple’s adult children) disagreed with their father’s refusal to withdraw life support.

The treatment team allowed a week to pass to allow the husband more time to be supported in his grief and to appreciate the gravity of his wife’s situation. Nevertheless, at the end of this time, the husband was unwilling to authorize withdrawal of life support measures consistent with the patient's wishes as expressed in her living will.

What should be done? What are the ethical and legal parameters?

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.

A 32 year old woman was admitted to the Trauma Intensive Care Unit following a motor vehicle accident; she had multiple injuries and fractures, with several complications which continued to develop over the first couple of weeks. The patient rapidly developed Adult Respiratory Distress Syndrome, was on a ventilator, and was continuously sedated. Shortly after the patient's admission, her parents were contacted and remained vigilant at her bedside. The parents reported that the patient was one month away from having her divorce finalized. The patient's husband was reportedly physically and emotionally abusive to her throughout their five years of marriage. The parents had not notified this man of the patient's hospitalization, and reported that a visit by him would be distressing to the patient if she were aware of it. The patient's soon to be ex-husband is her legal next of kin.

Should the husband be responsible for treatment decisions which the patient cannot make?22 What are the ethical and legal parameters?

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

A 17 year old young woman is diagnosed with acute lymphocytic leukemia. The patient and her family are practicing Jehovah’s Witnesses. Based on their religious beliefs, the patient and her parents do not want the medical treatment to include any blood transfusions or blood products. All non-blood alternatives had been attempted or deemed inadequate. The standard of care would require the use of blood products, to which the patient and her parents will not consent. There is sub-optimal treatment available which does not include transfusion support that the patient and her parents are willing to consent to receive. The physicians estimate that the difference in receiving sub-optimal treatment is that the minor’s chances for cure are probably diminished by at least 50%.

Can the 17 year old patient be deemed sufficiently mature to make her own medical treatment choices? Who has authority to make this determination?

Are the patient’s parents, as her legally authorized surrogate decision-makers, entitled to make a choice for their daughter? If so, would the parents be bound to use a “substituted judgment” or a “best interest” standard when making a decision on behalf of their minor child?

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.

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.

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.

A young mother has just been informed that her 2-year-old son has leukemia. The mother refuses permission to begin chemotherapy and informs the team that their family physician (a naturopath) will follow the child's illness.

What should you do?

Of utmost importance are the child's best interests, which include getting good medical care and maintaining a close connection with his mother. One way to achieve both is by requesting a care conference with both the mother and the family's naturopathic physician. It is best not to assume that the family's naturopathic provider is in agreement with the mother. The potential therapeutic value of chemotherapy is part of licensed naturopathic physician training, as is the specialist nature of cancer treatment. The family ND may fully support chemotherapy as part of the child's care plan. If the mother refuses this meeting and you remain convinced that chemotherapy is the only hope this child has, you are professionally obligated to seek a court order to appoint a guardian for the child. If chemotherapy offers a clear and compelling survival benefit, the justification for seeking legal intervention increases.

Your patient has been suffering from chronic low back pain for many years now. She voices her frustration with the various treatment modalities that you have been trying and says she is considering getting acupuncture.

How do you respond?

In this case, there are few clearly effective treatments for the medical condition. Hence, complementary approaches may be a reasonable recommendation, assuming they are not harmful. While you may know little about acupuncture yourself, you may encourage your patient to consult with local experts to inform herself about what acupuncture can offer. Encourage your patient to stay in contact with you and inform you about both the perceived benefits and any side effects she may experience.

Why is confidentiality important?

Creating a trusting environment by respecting patient privacy encourages the patient to seek care and to be as honest as possible during the course of a health care visit. (See also Physician-Patient Relationship.) It may also increase the patient’s willingness to seek care. For conditions that might be stigmatizing, such as reproductive, sexual, public health, and psychiatric health concerns, confidentiality assures that private information will not be disclosed to family or employers without their consent.

When can confidentiality be breached?

State law requires the report of certain communicable/infectious diseases to the public health authorities. In these cases, the duty to protect public health outweighs the duty to maintain a patient's confidence. From a legal perspective, the State has an interest in protecting public health that outweighs individual liberties in certain cases. For example, reportable diseases in Washington State include (but are not limited to): measles, rabies, anthrax, botulism, sexually transmitted diseases, and tuberculosis. Suspected cases of child, dependent adult, and elder abuse are reportable, as are gunshot wounds. Local municipal code and institutional policies can vary regarding what is reportable and standards of evidence required. Stay informed about your state and local policies, as well as institutional policies, governing exceptions of patient confidentiality.