Developed by: Daniel Swagerty, MD, MPH, CMD
Specific Learning Objectives
A. Introduction
Please review the Objectives, Content material, and Case Study before our class session. We will apply the tasks in the Skills Objectives to the case study, and you should think about them ahead of time.
B. Attitudes
C. Knowledge - Third year medical students should be able to:
D. Readings
Required Reading
Council on Ethical and Judicial Affairs, AMA, Decisions near the end of life, JAMA, April 22/29, 1992-vol 267,. No. 16, 2229-2233.
Recommended Reading
- Appelbaum PS, Assessment of Patients’ Competence to Consent to Treatment. N Engl J Med 2007; 357: 1834-1840.
- COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS 4-A-01 Surrogate Decision Making
- Ethics and Advance Planning for End-of-Life Care
- The SUPPORT investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognosis, preferences for outcomes and risks of treatments. Journal of the American Medical Association. 1995;274(20):1591-1598.
E. Skills-Third year medical students should be able to:
G. Case
A person's written, witnessed declaration that states wishes about the use or withdrawal of life-sustaining procedures in the event that the person loses the capacity to decide for him or herself and when such procedures would merely prolong death. The living will is only in effect in cases of terminal illness.
A signed, dated, and witnessed document that allows you to state in advance what your wishes are regarding the use of life-prolonging procedures. The treatment directive can be designed to cover varied clinical situations, and does not require a terminal diagnosis. Like the Living Will, the Health Care Treatment Directive cannot take effect until the patient can no longer communicate decisions for themselves.
Sample Form: Health Care Treatment Directive
An order to withhold the performance of cardiopulmonary resuscitative measures at the time of a patients death. Such orders are provided for medical settings in which cardiopulmonary resuscitative procedures are legally required.
Often a DNR order includes specific information about the types of resuscitative or supportive interventions the patient would accept in lieu of full cardiopulmonary resuscitation. For example: intravenous fluids, antibiotics, oxygen, and/or pain medications.
A document that gives another person chosen by the patient, the right to act on the patient's behalf in making medical decisions in the event that the patient is unable to participate in such decisions
Durable Power of Attorney for Health Care Decisions click here to view.
Competency and Decision-Making Capacity
Clinicians often use the terms “competency” and “decision-making capacity” interchangeably, but “competency” is a legal concept, while “decision-making capacity” is a clinical concept. Persons found by a court to be incapable of making the decisions needed for handling their affairs adequately and safely are declared incompetent. This declaration changes their legal status, removing their legal right to make decisions, and the court appoints someone to make these decisions for them. Incompetence is always a judicial determination; incompetency is by definition legal incompetency.The capacity to make (medical) decisions, however, is the ability to understand the nature and consequences (including risks and benefits) of medical interventions, and to make and communicate decisions based on that understanding. While courts use clinical information to determine competency, clinicians more often evaluate a person’s decision-making capacity. A person is either legally competent or incompetent to make medical decisions. Decision-making capacity is task specific and can be partial allowing people to make simple but not complex decisions. (See also: Ethics Module)
Assessing Decision-Making Capacity (DMC)
Clinicians often assess a patient’s decision-making capacity (DMC) in order to guide medical treatment, choice of living situation, or to assist in a determination of competency. DMC is essentially the ability to give informed consent for medical intervention. A cognitively impaired person’s ability to make decisions can be task-specific and situational. It may wax and wane as a result of the primary cognitive impairment and may reflect acute illness superimposed on that impairment. It may be affected by medications, anxiety, or even time of day.DMC will vary with the complexity, as well as with the risks and benefits, of the diagnostic procedure or treatment in question. A resident may possess the capacity to consent or refuse to have blood drawn, for example, yet may lack the capacity to understand and thus to consent to or refuse a chemotherapy regimen for cancer.
DMC has several components: the ability to communicate choices, to understand relevant information, to understand a situation and its consequences, and to manipulate information rationally. (1,2) To make medical decisions, a person must understand the nature of the illness for which a particular treatment is offered, the natural course of the illness without treatment, and the nature and consequences of the treatment. This understanding needn’t be physiologically sophisticated. All decision-making must be consistent with the resident’s belief system, especially when beliefs are particularly strong or unusual (3), or when life-saving or life-prolonging treatment is desired or refused.
The capacity to make medical decisions can be evaluated with open-ended questions about the specific illness and about the likely result of different treatments and of no treatment. The clinician might also assess the patient’s cognitive status using standardized instruments such as the Mini-Mental Status Exam (MMSE) (4), which when used alone is not sufficient for delineating decision-making capacity or the Hopkins Competency Assessment Test (5). Evaluation DMC might also test judgment, semantic knowledge (naming), verbal recall, and simple reasoning (6). (Note: the numbers 1-6 in the text refer to the 6 DMC references listed below the algorithm.)
Overview
A written advance directive allows a patient's previously expressed wishes and values to guide treatment choices at a time when he/she cannot participate in the decision-making process. Depending on applicable state law, an advance directive may take the form of:
- A living will or medical directive, in which the individual specifies therapies that he/she would or would not accept as treatment for specific medial conditions.
- A Health Care Proxy or Durable Power of Attorney for Health Care Decisions, in which the individual designates a surrogate decision maker in the event that he/she is unable to make decisions.
- A combination of both, in which the individual makes specific choices regarding therapy as well as designates a surrogate decision maker.
Among the possible kinds of Advance Directives, living wills have received the greatest attention. In many states, enactment of living will statutes has been a direct response to popular pressure, but notwithstanding the intensity of this debate, the statutes usually contain provisions that are sufficiently restrictive to greatly reduce their usefulness. For example, the statutes:
- typically limit living wills to the withdrawal of "life-sustaining treatment" from individuals who are "terminally ill." Situations in which the patient is in a coma and may live for months or years without ever regaining consciousness so long as treatment is provided, are effectively removed from consideration by the law. Likewise, progressive debilitating illnesses such as Alzheimer's disease would be excluded.
- often contain restrictions on when or how living wills may be executed, such as only by individuals who have been diagnosed as terminally ill and then only after a waiting period of 14 days. Many patients in such a condition are unable to maintain decision-making capacity for another two weeks. And even without the required waiting period, these provisions effectively exclude anyone who suffers a stroke or accident that leaves him/her without decision-making capacity.
- may authorize the withdrawal of life-sustaining treatment, but cannot provide a basis for affirmative acts such as the humane administration of morphine to a terminally ill cancer patient in great pain, when the injection may shorten or end life. State legislatures, like courts, have great difficulty confronting and explicitly endorsing the deliberate hastening of death, and they are justifiably fearful of potential abuse.
Health Care Proxies and Durable Powers of Attorney
The ongoing debate in many states over the language of living will statutes is often superfluous. Any adult with a friend or relative whom he/she is confident will act in his/her best interests can simply appoint that person to act for him/her in the event of incapacitation. Such legal instruments - called health care proxies or durable powers of attorney for health care - avoid many of the difficulties present with living wills, and they are recognized in the majority of states. However, they are not without ambiguities.
First, the maker of a power of attorney cannot grant his/her agent more authority than has the maker. To the extent the competent patient's right to resist medical treatment is in doubt, the same doubts will apply to the agent as well. Indeed, the doubts may be greater if state law does not explicitly authorize use of powers of attorney for medical decision making. In such cases, health care professionals may refuse to accept the agent's authority to make decisions with which they disagree, despite the broad language usually contained in statutes authorizing the use of durable powers.
Second, there is some feeling that the relative informality with which powers of attorney can be executed casts doubt upon the appropriateness of their use in exceptionally important (i.e., "life or death") decisions. For the reason - and also in response to the impassioned public discussion of cases such a Karen Quinlan (in New Jersey) and Nancy Cruzan (in Missouri) - many state legislatures are reviewing the laws authorizing durable powers with medical applications in mind. In Massachusetts, for example, the health care proxy laws says that any person aged 18 or older can designate a "health care agent" to make decisions about treatment in the event the attending physician decides the patient is unable to make decisions for himself or herself.
Patient Self-Determination Act
Current federal law explicitly recognizes the right of the various states, through their legislatures and courts, to establish within their jurisdictions the requirements for withdrawal of treatment and appointment of surrogate decision makers for health care. The Patient Self-Determination Act (PSDA) of 1991 holds that all hospitals, skilled nursing facilities, home health agencies, and hospice programs receiving Medicare or Medicaid funding must provide written information to all adult care recipients regarding the state's laws on Advance Directives. Such information must include:
- A statement of the individual's right under state law (whether statutory or as recognized by the courts of the state) to make decisions concerning his/her medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate Advance Directives.
- A statement of the written policies of the health care institution regarding the implementation of the individual's rights under state law.
In addition, as a further requirement of participation in Medicare and Medicaid programs, the health care provider must agree to:
- Document in the medical record of each patient whether or not the individual has executed an Advance Directive.
- Not condition the provision of care or otherwise discriminate against a patient based on whether or not he/she has executed an advance directive.
- Ensure the institution's compliance with the requirements of state law, whether statutory or as recognized by the courts of the state, regarding Advance Directives.
- Provide, individually or with others, education for the staff and the community on issues concerning advance directives.
Ethnicity as a Factor
Eleazer GP, Hornung CA, Egbert CB, et al., "The relationship between ethnicity and advance directives in a frail older population," Journal of the American Geriatrics Society 44 (1996): 938-943
Objective
Principal Finding
To assess the relationship between ethnicity and health care wishes including advance directives, in a group of frail older persons in PACE (Program for All Inclusive Care of the Elderly).
Participants in this study were 1193 frail older adults from 10 PACE sites across the U.S.: 385 non-Hispanic whites, 364 blacks, 156 Hispanics, and 288 Asians. The researchers found that participants differ significantly in their health care wishes and how they choose to express them. Blacks were significantly more likely to select aggressive interventions and less likely than non-Hispanic whites and Hispanics to utilize a written instrument for expressing health care wishes. Whites were significantly more likely to utilize written documents for Advance Directives, whereas Asians were more likely to select less aggressive interventions but were unlikely to use written Advance Directives. The researchers concluded that while health care wishes are an individual decision, an awareness of cross-cultural patterns can assist practitioners in addressing the concerns of their patients.
Resource Utilization at End of Life
Teno J, Lynn J, Connors AF, et al., "The illusion of end-of-life resource savings with advance directives," Journal of the American Geriatrics Society 45 (1997): 513-518.
Objective
Principal Finding
To determine if increasing chart documentation of pre-existing Advance Directives leads to a reduction in resource utilization at end of life.
In five teaching hospitals in the U.S., a total of 9105 seriously ill patients were enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT): 4301 patients in the two years (1989-1991) before the Patent Self-Determination Act (PSDA), and 4804 in the two years (1992 - 1994) after PSDA implementation. In the post-PSDA implementation phase, 2652 patients received the SUPPORT intervention and 2152 patients served as controls. Researchers found that chart documentation of pre-existing Advance Directives increased with both the PSDA and the SUPPORT intervention, and that intervention patients were more likely to have pre-existing Advance Directives documented. Yet, despite a substantial increase in the documentation of Advance Directives following implementation of the PSDA, there was no corresponding change in hospital resource use among those who died during hospitalization. Advance
Directives documented by the third day of a serious illness were associated with a 23% reduction in hospital resource use among control patients; however, this association was not observed among intervention patients, who had more pre-existing Advance Directives in the medical record. Rather, intervention patients with early documentation of Advance Directives showed a trend towards greater cost. The researchers speculate that "advance directives [ADs] as currently used, are not the result of an informed discussion between a health care provider and patient. Furthermore, ADs do not appear to increase communication between patients and physicians regarding preferences for care at the time of a serious illness.”
Whether performing a comprehensive assessment in an impatient or outpatient setting, it is usually best to save discussions about end of life issues for the end of your contact. In a critically ill patient, the discussion will have more immediate importance, and can be done in the context of your prognosis and potential treatment options. For example, in a patient with pulmonary edema, as you discuss your treatment plans with the patient, you might state the following:
"I expect that with hese medications and oxygen, that we should be able to get rid of much of that fluid on your lungs and that you will do well. However, it is possible that you will not get better. One option at that point would be to place you on a ventilator that would help you breathe with the hope that we could reverse some of the problems that you have."
At this point, you could discuss the pros and cons of ventilation with the patient. It is important in this instance, to tell the patient that regardless of the choice, you will administer medications (i.e. morphine) in doses that will ensure comfort. The patient also needs to know that the choice of being on a ventilator could be reversed should he become unconscious with little hope of recovery.
In an outpatient setting one way to begin the discussion could be:
"None of us can predict the future. We know that death is inevitable and that sometimes disabling diseases can strike us. If I'm to do a good job as your doctor, it is useful for us to discuss how I should care for you, in the event that you don't have the capacity to discuss the options with me. One way to begin this discussion is for you to tell me the things you value most in life and under what (if any) circumstances, life would no longer be worth living for you."
Focusing on patient values is much more useful and important than only discussing combinations of treatment options. Values that are commonly elicited include: spiritual beliefs, the value of being able to participate in meaningful interpersonal interactions (especially with loved ones), and to work effectively. Most people define life by its quality, though there are some that feel that just the presence of life itself is of the utmost importance regardless of its quality.
When we understand our patients' values, we can more readily decide what they would want should catastrophic illness befall them, and cause them to lose capacity for medical decision making. In taking a values history, we need to understand what makes life worth living for our patients and under what circumstances (if any), would they no longer value living.
If a patient states that she would no longer want to live if she lost the ability to participate in medical decision making (and had little hope of regaining that capacity), this would be useful in guiding treatment decisions. Losing the capacity to make decisions often parallels the loss of capacity for communicating about other important aspects of life.
Patients with dementia or other cognitive problems may still be able to express their values and participate in medical care decisions. Their level of capacity to understand the problem at hand needs to be determined on an individual basis.
When a patient has lost capacity for decision making you will need to identify the appropriate surrogate to speak for the patient. If a health care proxy has not been completed, the surrogate is usually by default a spouse, immediate family member, or a sibling. At times, the person who has most knowledge of a patient's wishes may be a good friend, caregiver, or even their pastor. Identifying all potential surrogates early in the process, and speaking with them together, can identify any discordance in the group. Identifying and explicitly addressing any discordance, often facilitates resolution. For example: In a situation where two very involved siblings disagree about whether to write a DNR order (during a hospitalization for their mother with dementia), you might state the following:
"I can see that the two of you have some disagreement about the best course of action to pursue here. I know that you both love your mother very much, and want to do what is best for her, as do I. Our duty, together, is to decide what she would want under these circumstances. I know that neither of you wants to lose her. I have already discussed the pros and cons of CPR with you, and told you what I think is the best course of action. The two of you need to spend some time talking about this, so the three of us can treat your mother in a way that she would want."
If the patient's wishes regarding CPR are not known or cannot be ascertained, then it is appropriate to decide on the basis of the patient's best interests.
When discussing the appropriate course of action with the surrogate(s) it is important to separate what treatment the patient would want under those circumstances from what the surrogate might want.
Exploring this allows you a better chance of following your patient's wishes and understanding how the impending loss of a loved one might factor into the surrogate's thinking.
It can be helpful to think of the type of information you are eliciting in three tiers (from most desirable to least desirable).
1. Advance Directives
"Did your mother ever talk about death or how she might like to be treated if she became unconscious? Did she ever talk with you or anyone about her wishes if she became deathly ill? Did she ever make any comments when others around her have died on how she might like to be treated under similar circumstances?"
2. Substitute Judgment
"If your mother could speak now what would she tell us? I know that you love your mother, and hate the thought of losing her, but we need to decide what she would want under the present circumstances - not what you or I might want."
3. Best Interests (when 1 and 2 cannot be surmised)
"Since we cannot decide what your mother would want, we can judge what the average person would choose, to help guide us. When I talk to my patients about this, many of them tell me they would want...."
Using one of these three tiers of representation will allow physician and family to remember that we are not representing what the patient would want and not necessarily what the family wants. Admittedly, the margins between this distinction can often be blurred.
It is important to tell the health care agent (HCA; also known as "health care proxy") which course of action we (as physicians) think is most appropriate. This should be done in a way that is empathetic and supportive. One must be very careful to avoid coercion or an implicit threat of abandonment, should the HCA disagree with our point of view. We allow people to make choices that we might disagree with, in the interest of patient’s autonomy.
It is essential to have a clear understanding of statements made by patients and physician when discussing any issues. Accepting a statement at face value can lead to erroneous conclusions. Some examples are illustrated in the following conversation between a physician and 79 year old male patient with severe emphysema. After a recent hospitalization for a respiratory tract infection the physician has a discussion about advance care directives.
MD:
"You had a very rough time this past hospitalization. I was worried about you."
Pt:
"You and me both. I wondered at times if I was going to make it."
MD:
"This may be a good time to discuss that further. Had your breathing not improved, there would have been some other therapies to consider, including artificial ventilation."
Pt:
"I never want to go on one of those breathing machines...NEVER."
MD:
"Do you know that you might die sooner if you made that choice?"
Pt:
"That's OK, it's no way to live"
At first glance, this seems like a reasonable conversation with an adequate exchange of information. The doctor may have concluded here that the patient would "never" want artificial ventilation. However, the conversation continues.
MD:
"What is it that you're most afraid of, or concerned about here?"
Pt:
"I had a friend who spent the last month of his life on a ventilator, and I would never want to die like that, it's inhumane."
MD:
"Sometimes people with emphysema, like yourself, get infections similar to the one you had during your last hospitalization. They may need to be on a breathing machine for a few days or a week and then come off of it and resume their lives. What do you think of that?"
Pt:
"Well....that would be OK, if I could have a decent life. I don't want to live hooked up to a machine though. That is what I fear the most."
MD:
"I could use the ventilator if I thought you had a reasonable chance of coming off of it. What do you think of that?"
Pt:
"I trust you Doctor. I know that you are not God, but if you would think that the chances are reasonable, you can give it a try."
MD:
"If you were conscious, and on the ventilator we could still communicate, by having you nod, or write to me. We could decide the best course of action together. I understand your fear of having a prolonged time on the ventilator. "
Pt:
"But if I wasn't able to communicate enough to decide for myself, and it didn't look like I would be able to again, I would never want to stay like that."
MD:
"So it sounds like being able to make your own decisions is very important to you?"
Pt:
"Absolutely! If I couldn't do that I wouldn't want to live."
We come to some very different conclusions as the conversation continues. We have learned that the patient most fears a prolonged death on a ventilator and that he places great value on being able to make his own decisions. He would want a trial of ventilation. Further conversation continues.
MD:
"Tell me why being able to make decisions is so important to you."
Pt:
"If I couldn't decide for myself, than I couldn't talk with people in a way that is important to me, about important things, like, what is happening in the world, and what my grandchildren are doing. I want to contribute somehow. That is most important to me."
MD:
"That is very important for me to know, should you ever lose the ability to make decisions."
The ability to take part in interpersonal interactions at a complex level usually coincides to some level with the ability to make medical decisions. This is a common area that people place value in, and sometimes helps to "draw the line" where they define their own quality to life, and a life worth living. Clarifying statements to understand core values can be very useful in an area of decision making with so many possibilities and the potential for a change of heart as sentinel events occur. Most patients and physicians want to intervene when there is a reasonable chance for a successful outcome, and to stop a therapy that has been unsuccessful and is only prolonging suffering.
A patient's core values should be documented in the outpatient record. They form the basis of the physician-patient relationship and should be expanded and refined as that relationship grows.
When specific medical decisions have been made in the context of these values (i.e. DNR), legal forms consistent with state laws should be completed; copies should be placed in the chart and given to the patient. Patients should be encouraged to speak with their family and/or surrogates about their decisions to facilitate communication to all parties and to resolve any misunderstandings about the patient's wishes. Patient, family and/or surrogates should be given the opportunity to meet with the physician if they desire to discuss the issues further. It should be made explicit that the decisions will be reviewed periodically and with any acute medical events, and may be subject to change at any time the patient wishes.
Should a patient wish to bypass the usual hierarchy of surrogates (spouse, immediate family, siblings, etc.) a health care proxy document should be completed, naming the health care agent that the patient would want to speak for him/her if capacity is lost. This should then be reviewed with the health care agent and with any other parties that the patient wishes.
Patients who wish to forego emergency therapies such as CPR should be instructed to place a completed form in an easily accessible area (e.g. refrigerator), making it available to any emergency team such as ambulance crews that are called for help. When a patient is nearing death, support services such as hospice should be put in place to avoid the need to activate emergency services.
Read through this case and be prepared to discuss it during our discussion session.
Scenario:
During your rural health rotation you are working in Emergency Room (ER) when an ambulance arrives in the ER with one of your preceptor's patients who needs to have an IV line placed. You overhear the nurses commenting that this is the third visit this week for this patient. You decide to look into this case.Mr. J is an 89 year old male who is a long-time resident of a local nursing facility. He has end-stage Alzheimer’s disease, hypertension, congestive heart failure, peripheral vascular disease, and chronic lung disease. He has been bed-bound for nearly a year and has had multiple hospitalizations for his heart disease, lung disease and pneumonia. Currently, he is unable to reliably take his oral medications so IV access has been maintained to provide an IV route. Recently, even IV access has been unreliable and the patient has, indeed, made three trips to the ER this week for IV restarts.
Given Mr. J’s history of Alzheimer’s disease, you look for his Advance Directives. You find that his durable power of attorney is his only surviving daughter. You also find a living will that clearly states Mr. J would not want life-sustaining treatments in the event of a terminal illness. It has no other specific information. Chart notes indicate, however, that the daughter, as durable power of attorney, has requested the hospitalizations and plans to maintain IV access. She reportedly wants "everything done since now there are more treatments available for Alzheimer’s".
While the nurses proceed in obtaining IV access, you call your preceptor. The preceptor knows the situation well and has scheduled a meeting with the daughter for later that day.
Questions:
- How would you approach a discussion with the patient’s daughter?
- Given what you know of the patient’s wishes, are his daughter’s actions ethically appropriate?
©
The University of Kansas Medical Center
