Some Patient Concerns That Influence Satisfaction Dissatisfaction

Family/spouse relationships

Faith in God

Health/health care

Long life

Sex life

Stress/worry

Unemployment/employability/insurability/financial independence

Government influence

Length of treatment

Financial burden of treatment

Disfigurement

Dysfunction

Substance abuse

Concerns about the future

Inability to do things

Fear, anxiety, depression, anger, loneliness

Survivorship issues

SOURCE: Arrzouman JM, Dudiss S, Farance CE, et al. Quality of life of patients with sarcoma post-chemotherapy. Oncol Nurs Forum 1991;18:889-894.

her destiny. There is increasing need to recognize that treatment decisions are not up to the physician; rather, they are the patient's decision. Treatment managers often lose sight of this. A rapidly expanding new literature suggests that patient satisfaction may directly relate to the degree to which the patient is allowed to become involved in decision making concerning the treatment process, and that the more empowered patients are, the more satisfied (and less litigious) they are with the treatment outcome, although the outcome may be what a doctor would consider unfavorable (e.g., cancer recurrence). Again, it is important to be aware that physician and patient opinions on what constitutes an unfavorable treatment outcome may differ significantly. For example, physicians typically consider cancer persistence/recurrence the ultimate unfavorable outcome and fear litigation for failure to control cancer with treatment but this may not occur to a patient who is "satisfied" by having been allowed to participate in treatment decision making, if a choice of treatments exists. Patient satisfaction can also be optimized if treatment managers indicate "up front" that cancer cure cannot be guaranteed—which patients readily understand, in my experience—and also do not make premature statements that the treatment has cured the patient based on initial tumor "response," such as at the conclusion of initial treatment.

The "patient empowerment" trend is in direct contrast to the decades-old paternalistic attitude of doctors who often made treatment decisions without discussing options with the patients or their families, or even indicating that there were treatment options. The classic example is that the patient with cancer was often not told of the diagnosis, although members of the family might have been. There may also be a particular tendency to dehumanize the "typical" HNC patient who has often been somewhat stigmatized by the presumed risk factors associated with the disease. A history of alcoholism, lack of gainful employment, lack of family and social support, poor educational level, etc., may contribute to the impression that patients are not qualified to participate in their own treatment planning, with physicians often assuming that the patient has neither the requisite intelligence, interest, nor reliability. This is documented to some extent by studies that have shown that physicians perceive the need for surrogate studies concerning QOL issues in HNC patients rather than questioning the patients themselves.60

During the past decade or two, this attitude has been corrected somewhat by a more concerted attempt to present the patient with available multidisciplinary treatment options by having patients talk to each subspecialist involved. However, the presentation is often heavily biased and may actually represent form more than substance. Physicians may feel that empowering the patient might be construed as a sign of weakness on their part, assuming that patients want a strong authority figure managing their medical care who is always in control and knows exactly what to do (a "powerful other"). It is important that physicians begin to realize that facilitating patient empowerment does not imply weakness on the part of the physician. Physicians can provide an environment of patient empowerment by giving the patient a sense of control; by exhibiting care, concern, and reassurance; and by respecting the patients and their identity in allowing them to participate in the decision-making process. Such factors rank high on patient satisfaction surveys, more so than the impact of technology, as patients can more easily evaluate their interpersonal relationship with their doctor than they can technical expertise.

Another aspect of patient empowerment by physicians is encouraging patients to live a healthy lifestyle, to change their diet, to engage in physical activity, and to eliminate habits that constitute risk factors, as this type of activity can also provide a sense of personal contribution to health and improve well-being. Issues relating to QOL and "well-being" are much more complex and global than assessing the impact of treatment on a particular function (swallowing, airway, voice, appearance) and QOL outcome depends largely on factors relating to the patient (e.g., "will to live," personality, support systems) of which the doctor may have little awareness based on a brief acquaintance with the patient and family.

Another area of oversight on the part of physicians that is being increasingly recognized54'55 is the impact of religion and spirituality in medicine. In 1910, William Osler wrote about "the faith that heals." Spirituality and research on religious factors in health has become as sophisticated as any other growth area within epidemiology. Recent surveys reveal that nearly 80% of Americans believe in the power of God or prayer to improve the course of illness. Nearly 70% of physicians report religious inquiries for counseling on terminal illness, but only 10% of physicians ever inquire about the patient's religious beliefs or practices. "This oversight is a result of the focus on the etiology of disease and effect of therapies, at the expense of fostering caring and humane concern for patients."54 Increasingly, medical education is introducing humanistic concepts through cur-ricular innovations in didactic clinical and postgraduate training. Considerable data document that religious commitment may play a positive role in promoting physical and mental health. Religious commitment may help prevent many clinical problems, including depression, substance abuse, physical illness, and early mortality. The impact of religious belief may have significant relevance in the areas of prevention, coping, and recovery of cancer patients. Some researchers have recommended that physicians consider the religious orientations of their patients when designing or implementing a clinical treatment plan. In a recent survey, more than 75% of patients surveyed thought that their physician should address spiritual issues as part of their medical care.55 Religious considerations may be of new or increased importance to a patient who has received a diagnosis of cancer. Nevertheless, the dichotomy between religion and science has pervaded Western intellectual endeavor for 400 years, and the two will not be amalgamated overnight.

Many currently practicing physicians have not been trained in ways to address such nonscientific patient concerns, but terminology used in Matthews's article55 can be modified to address a number of such issues. It was suggested that clinicians might ask "is your religion (or faith) helpful to you in handling your illness?" If the answer is yes, they might follow with "what can I do to support your faith or religious commitment?" This might be a "politically correct" way to inoffensively derive information on a variety of sensitive issues. If physicians were to ask these questions more routinely in medical care, they would presumably gain access to potentially valuable information on how to integrate such factors into the care plans of particular patients, especially those suffering from chronic or severe illnesses. An adoption of any of these practices is likely to lead to enhanced quality of care and patient satisfaction. Physicians can also refer patients to clergy or chaplains as an adjunct to standard medical care. The involvement of clergy might be especially important in support of patients who have little social support from family members.

One example of how physicians could more frequently empower HNC patients in participating in their own treatment decisions relates to the controversial management of the NO neck. The impact of widefield (non-parotid-sparing) radiotherapy even in elective doses (which have progressively increased over the years) is multifactorial (dry mouth, difficulty retaining and gagging on dentures and other intraoral appliances, profound, often long-term fatigue, and appetite disturbances) and presumably has impact on the patient's QOL. This leads to the hypothesis that the QOL of many patients would be enhanced if there were equally effective alternatives to widefield radiotherapy. Admittedly, in some treatment regimens (initial chemoradiotherapy) there is little option to decrease the radiation portals and, even if surgery is the initial treatment, postoperative radiotherapy may need to be widefield in order to provide adequate coverage of the primary resection bed. However, a plan that spares the contralateral parotid could be considered for many lateralized primary tumors with a low incidence of cancer spread to the contralateral neck. The patient could participate in the decision as to whether the opposite neck is operated electively (END), irradiated electively (ENI), or observed expectantly. Although physicians are treatment oriented and generally feel more comfortable with some type of treatment rather than observation, when the evidence-based (scientifically valid) data are examined, it is clear that the issue is still controversial and that any of the three options is acceptable and does not deviate from the "standard of care."61

The patient could be presented with numbers relating to the likelihood of cancer recurrence for each of these options, the likelihood of negative consequences (shoulder syndrome with END, xerostomia associated with ENI), as well as the salvageability of recurrent cancer in a neck that has been treated or observed. If one contrasts a likely contralateral incidence of occult lymph node metastases of 15 to 20% on average (which might be controlled by the host immune response), the virtual 100% guarantee of negative consequences related to xerostomia with widefield non-parotid-sparing radiotherapy, the impact of the treatment decision becomes clear. Salvageability of recurrent cancer is often optimized in the "observed" neck, as surgery and postoperative radiotherapy are still available. In one study, recurrent neck cancer was half as common after END as ENI and three times as salvageable in observed as in treated N0 necks.62 Obviously, allowing patients to talk with others who have had such treatment is also recommended. The patient's choice (treatment vs observation) is likely to relate to their personality and risk-taking tendencies. Some patients may be uncomfortable with the potential for cancer growth and would like to feel that everything possible is being done to prevent it, thus choosing treatment, whereas others may prefer to enjoy the enhanced QOL that presumably accompanies the absence of xerostomia. Such considerations are discussed in more detail in the recent literature.61

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