Volume 11, Number 3, November 2000

Case Study In Alternative Therapy and Public Health Care Services

Bashir Jiwani Coordinator, Northern Alberta
Provincial Health Ethics Network

Catherine Dempsey is a 57 year old much beloved mother of five. Eighteen months ago, Catherine presented with cancer of the liver, which she chose to treat with "alternative" therapies alone. Twelve months ago, a CT scan revealed that the cancer had metastasized to Catherine's brain. At that time, Catherine agreed to receive the steroid Dexamethasone. She also took oral "Vitamin B17" (Laetrile). Following this, Catherine showed some resolution of the brain metastases. Unfortunately, her condition has been getting steadily worse over the last two months. Last week, Catherine was admitted to the hospital with severe seizures and delirium. She is currently in hospital while the controversy about her care gets resolved.

Catherine's family contends that the Dexamethasone caused the deterioration, and have "evidence from the internet" that suggests that steroids are dangerous. They insist that the improved brain CT scan was due to the Laetrile. They want the Dexamethasone to be discontinued and the hospital staff to put in an I.V. line for the Laetrile. In the meantime, they are giving Catherine Laetrile orally. The hospital policy states that administration of herbal medicines should occur with approval of the attending physician who has the responsibility of prescribing the type, quantity and regime of drugs. The staff members are confused and concerned and are unsure what to do. The possibility of a transfer to palliative care has been raised.

The central question that Catherine's case poses is, what should be done when a patient/family requests a treatment that the health care team disagrees with and that appears to contravene institutional policy? The critical issues in this case are: 1) personal autonomy and values in health care (HC) decision-making; 2) setting the goals of care; and 3) tensions central to the debate on complementary therapies.

1) Setting the Agenda: Patients, Families and Health Care Providers

Patient

One of the core values held in Western society today is that of respect for personal autonomy - respect for an individual's right to make choices affecting him or her. Based on respect for personal autonomy, it follows that in health care the values of the person whose wellbeing is compromised ought to guide any decision-making about his or her care. The distinction between the patient and his or her values and preferences, and family members and their values and preferences should be kept clear at all times. Notwithstanding this distinction, the individual patient may legitimately opt to include one or more other individuals in the decision-making, or even have someone else make health care decisions on his or her behalf.

Family

When an individual is unable to (or does not want to) make decisions, the next step is to develop a substituted judgment (i.e. what would Catherine most want based on what she thought was important in life?). Families often (but not always!) have insight into this question and can assist in the health care decision-making process. But this does not always happen. Instead families, and others who are consulted, sometimes offer opinions based upon their own personal values rather than upon what the loved one would have wished done. This common error in clinical ethics can be avoided if the above distinction is explained clearly to families in a sensitive manner. In Catherine's case, if Catherine's values/wishes were in concert with her family's, then the alternative therapies conflict must be dealt with because that is what the patient would want based on her values. If it turns out that Catherine's values/wishes were divergent from the family's, then the question of alternative therapies is but a red herring and the ethical issue is no different from a case involving disagreement over a conventional therapy.

Health Care Providers (HCPs)

HCPs have a moral obligation to ensure that the patient considers and examines carefully all options in light of his or her values. HCPs should engage the patient in a discussion about values and about how decisions concerning care plans ought to be made. In this discussion HCPs should not impose their values onto the patient or coerce the patient into acting in accordance with hospital policy, but rather should ensure that a decision is reached based on thoughtfully considered moral reasoning. It is also important to note that HCPs should not be manipulated at the whim of the patient/family as they too are moral agents whose values deserve respect. Institutional or regional health ethics committees can be a valuable resource in assisting to clarify situations of ethical uncertainty in clinical decision-making.

2) The Goals of Care

An important feature of this case is that a shared understanding of the goals of care for Catherine does not seem to be in place. Is the objective to (a) cure her of her cancer or (b) make her as comfortable as possible in her last days?

Based upon the earlier discussion of autonomy, the goals of care should be based largely on the values of the patient, with guidance based on medical and nursing expertise from the HCPs, as well as input from family and others when this is what the patient wishes. This type of communication is central to the delivery of good health care. When this communication is lacking (and it frequently is based on experience from clinical ethics committee consultation), we run headlong into real ethical problems in the clinical setting.

Option A) Curing the Patient

If this is the agreed upon option, then a discussion should take place clearly articulating what allopathic medicine can and cannot do for Catherine. This must happen using language that will best ensure the patient/family will understand the medical and ethical issues involved. The discussions should be seen as a process and not a discrete event.

What happens if the patient refuses treatment?

From the above discussion of the principle of respect for autonomy, it follows that Catherine herself can legitimately refuse any mode of treatment as long as she has the capacity to make that particular decision. Whether the treatment offered is life-saving or not should not interfere with her legal and moral right to refuse. If the health care team feels that a certain treatment is appropriate, they ought to try (paying close attention not to be coercive) to persuade Catherine that that option is in her best interest. But if she is clear that the treatment is not acceptable to her, then her decision to refuse must be respected. Of course the refusal of a given treatment is not a refusal to accept "care". When a certain treatment option is refused, the challenge for the health care team becomes how to assist the patient/family to achieve the goals of care without this particular treatment.

Can patients/families demand treatment that the health care team are unfamiliar with?

The ethics of accountability suggest that it is appropriate to expect certain things from people/systems, as long as whomever/whatever is being held accountable possesses the expertise and resources to do what is being expected. In today's health system, most HCPS are trained in allopathic medicine that is grounded in the bioscientific model. That is their expertise, and that is what they can be held accountable for. On this reasoning, it is inappropriate for them to be asked to provide care that is beyond their expertise.

However, several points are worth noting:

i) In certain cases, it may still be appropriate to assist a family in delivering treatment that the health care team is unfamiliar with. For example, if the goals of care for Catherine are to make her comfortable, then it may be appropriate to provide or assist with a treatment, even if the treatment has no obvious physiological benefit (provided the treatment is not illegal or harmful when there is consensus around what constitutes harm).

ii) It is very important to recognize the biases that exist in the delivery of health care. Currently, one could argue that the health care system is biased towards Western allopathic medicine. One could further argue that if this system is to advance the wellbeing of individuals, and if the community sees wellbeing as going beyond just the physiological-disease model of illness, then other approaches/forms/modalities of health care ought to be incorporated.

iii) The language of modern medicine, including terms such as "drugs", "medicines", and "prescribing", is itself value-laden. For example, families are allowed to bring foods into hospital for their loved ones to consume without problems (indeed this is seen as a laudable act of love). However, were families to have these same foods ground up into "medicine pills" great concern would be raised. The point is that these distinctions may not be as clear as the HCPs think they are and we ought to be wary of such ambiguities.

Can patients / families demand treatments that the health care team feels are harmful?

This is a tricky question that one should be wary of - and the treachery lies in the fact that the question as asked is value-laden in that there is a presupposition of "harm" in the act being considered. One must first ask the question, who gets to decide what constitutes "harm"?

Perhaps a more helpful way of framing this question is to ask, can a patient request care that will not be successful in meeting the objectives of care? At first glance, it seems unjustified to ask an individual to do something that will not work, provided that there is good and clear evidence to indicate that it will not work. To so force someone, is to disrespect his or her professional knowledge. Thus, one could argue that it is ethically inappropriate to demand of an individual that they act in ways that run contrary to their professional expertise. As well, it is disrespectful to force an individual to act in ways that they find morally repugnant.

But again a number of further points need to be made:

i) One has to be clear in distinguishing cases where one has no information about the efficacy of a certain product, one knows that a product will not work to achieve the physiologic benefit in question but also is not known to result in harm, and one knows a product to cause harm. It is very easy to slip from saying that a given treatment will not work to saying that it is inappropriate to take certain risks or to try to achieve a certain goal. In light of the relative power differential between health care providers and patient/families in the health care setting, it is critical for health care providers to guard against using their position of authority to extend their expertise on the clinical matters to that of matters moral.

ii) The issue of respecting the moral objections of HCPs in delivering care is not as clear-cut as it may appear. It must be balanced with responsibilities to ensure access to all health services and to avoid discrimination according to morally irrelevant criteria. This discussion is beyond the scope of this paper, but must be taken into consideration in any health policy development.

iii) There may be times when it is ethically justified to participate in delivering care that will certainly cause physiological harm either temporarily or permanently. For example, it may be ethically required to give the requested cigarette to a man who is dying.

So, with respect to Catherine, if the goal of care is to try and cure her cancer, the HCP must not act in a way that runs counter to professional skills. If Laetrile is known to make the cancer worse, then there is no obligation to offer the product. If there is little or no evidence to suggest that Laetrile is harmful in this way, then the obligation is less clear. If the treatment is known to be harmless, there may be stronger ethical support for providing it.

A real worry with Catherine's case is that HCPs will argue (quite possibly with anger and resentment) that they cannot be in the business of doing anything and everything that a patient wants. They possess expertise that is used for the benefit of others - not for participating in a free-for-all anything goes system enslaved to consumer demand. I would argue that this is a justified position, based on the ethics of accountability. However, I believe that to hide from the presence of alternative approaches to health care is to be blind to current realities and to avoid one's professional moral responsibility to advance the wellbeing (broadly defined) of those in the care of the health system.

Option B) Making the Patient Comfortable

If the goal for Catherine is solely to make her comfortable, then the question is, how and where ought this be done? As for how, again the challenge for the health team will be to develop a plan that will best achieve the agreed upon goals of care. This may require treatment that will have net physiologic harm. Difficult questions will then have to be faced about the extent to which a socialized health system should go in making individuals comfortable. In terms of the location of caregiving, the question seems to be whether Catherine should be in a palliative care ward, some other institution, or at home in the care of loved ones? Whatever the answer, it seems clear that she should not remain in an acute care setting.

3) Central Tensions in the Complementary/Alternative Medicine Debate

a) Privileging some knowledge over other

As mentioned earlier, the bioscientific model of medicine is privileged in Western health systems. This model makes broad assumptions about what constitutes health and illness, tying wellbeing to an absence of physiologic dysfunction. But these assumptions are not universally accepted, and are being questioned increasingly by a population that comes from a variety of cultural, religious and geographic backgrounds. It is important to recognize these biases and to work against inappropriately prejudicing the health system against methods for achieving the goal of advancing the wellbeing of those in its care.

b) Attention to Relationships

The bioscientific model also assumes certain things about the moral agents involved in decision-making. These assumptions range from seeing the patient as absolutely dependent, making the HCP the moral expert (in keeping with the Hippocratic tradition), to seeing the patient as a self-interested, independent decision-maker of equal cognitive and emotional power with a clear understanding of her values (as evidenced in the conventional informed consent process). The trouble is that neither of these accurately represents the human experience.

Human beings are interdependent creatures who grow, develop and flourish amid a rich context of relationships. Indeed real growth and moral understanding in human life often happens at such difficult times as when one is facing an important health issue. This is as true for the HCPs as for patients. In dealing with any difficult ethical issue in the health care setting, careful attention to the various relationships is needed. The relevance of this tension to Catherine's case is that it is easy to see the case as a conflict over appropriate treatment. Yet to exclusively focus on this apparent conflict may cause one to miss out on other issues that might be at large relating to the growth of the patient/health care team. It is most often shortcomings in the interpersonal human communication elements of a case that give rise to tensions in the clinical setting.