I ask knowledge what it can tell me of life. Knowledge replies that what it can tell me is little, yet immense. Whence this universe came, or whither it is bound, or how it happens to be at all, knowledge cannot tell me. Only this: that the will-to-live is everywhere present, even as in me. I do not need science to tell me this; but it cannot tell me anything more essential. Profound and marvelous as chemistry is, for example, it is like all science in the fact that it can lead me only to the mystery of life, which is essentially in me, however near or far away it may be observed. Albert Schweitzer (1)

Life and death are intensely personal and social experiences. The way an individual faces life-threatening disease and obtains support from others reflects the shared beliefs and values of the particular culture, society, and treating physicians (2). Over the past several years, it has become clear that the optimal care of patients with progressive motor disorders includes attention to both psychosocial and medical needs. Regardless of the etiologic diagnosis, the goals of pyschosocial and palliative care are to enhance, or at least maintain, quality of life by keeping the disruptive features of the disease to a minimum. Such care reinforces independence and self-esteem and enhances useful coping strategies and treatment options while actively identifying and modifying maladaptive behaviors. In progressive and ultimately fatal disorders without known cure or effective therapy, such as amyotrophic lateral sclerosis (ALS), a psychosocial and palliative model of care can help the patient live and die in a desired manner.

This chapter focuses on the integrated palliative and psychosocial care of patients with ALS; however, the concepts are applicable to other progressive neuromuscular disorders. The essential aspects of the classification, diagnosis, laboratory evaluation, and pharmacotherapy of inherited and acquired ALS are reviewed in preceding chapters in this volume (1-5,31-32,38-40,41-43).

GENERAL CONSIDERATIONS

The psychological and social needs of a patient with progressive motor disorders should be ascertained as soon as possible after the diagnosis is made and discussed with the patient and family, because the emotional reaction to the perceived loss of bodily integrity commences right away. Denial, fear, and anxiety are early reactions, followed later by depression and anger, with an intensity and duration that depend on the severity and rate of progression of the illness, individual character, family variables, and envisioned changes in lifestyle. For several reasons there may be lingering doubts or disbelief of the diagnosis even after a lengthy evaluation. First, the diagnosis of ALS is a clinical one, substantiated by laboratory studies, in particular, electromyography and muscle biopsy, with an accuracy of about 95% in experienced hands. Second, the time to correct diagnosis may lag by weeks or months, with some patients given alternative diagnoses or inaccurate information about the disease. In one study, a third each of 33 patients and their families complained that the diagnosis of ALS was withheld too long or crudely relayed (3). At the time of diagnosis, the leading concern in one half of patients was the prospect of becoming disabled and dependent on others, followed by the uncertainly in the length, mode of progression, and nature of the terminal phases of the illness. Third, neurologists can have different styles of communication, with some transmitting their sense of helplessness about the disease and concentrating on the inevitable clinical decline and time to death and others proactively engaging the patient in useful dialogue. Experienced ALS clinicians recommend as many visits as necessary to address personal concerns, treatment expectations, and other questions, because information overload frequently occurs after the initial discussion of the diagnosis.

ALS presents particular challenges because the cause of the disease is not well understood; for the most part, the course of ALS is relentlessly progressive with few stable plateau periods, and approximately 50% of patients die within 3 to 5 years of diagnosis. Its predictable pattern of functional decline permits evaluation of the effects of psychological, social measures, and therapeutic interventions on prognosis and outcome. Measures of psychological well-being were related to outcome in a cohort of 144 patients with ALS in which depression, hopelessness, and perceived stress are more likely to occur in patients with advanced physical disability who are closer to death (4).

An integrated medical and psychosocial approach usually reveals potential medical problems earlier and provides a more effective utilization of resources, particularly in the present managed care environment. The multidisciplinary team includes a neurologist; advanced care or clinical research nurse; physiatrist; physical and occupational therapists; speech, swallowing, and otolaryngologic specialists; psychologist or psychiatrist; clergy; social worker; respiratory and vocational therapists; and nutritionist. Advanced-trained nurses can provide valuable leadership by virtue of their pivotal position as contact person for patients, their families, and other team specialists.

CHALLENGE OF PSYCHOSOCIAL CARE

It is in reverence for life that knowledge passes over into experience . . . My life bears its meaning in itself. And this meaning is to be found in living out the highest and most worthy idea which my will-to-live can furnish. . . . Albert Schweitzer (5)

In this section we consider the psychosocial aspects of the relationships between the patient, family, and healthcare team and five specific suggestions to optimize them.

1. Ensure that the relationship established with the patient and their family is professional, with clearly established boundaries and expectations.

Healthcare professionals should strive to create as best as possible a warm, welcoming, hospitable environment. To offer hospitality, in the true sense of the word, is to offer an environment that restores the patient's spirit and their physical nature (6). Hospitality and hospital are of the same Latin root, hospitis, which means host, guest, or friend (7). Practically speaking, optimal relationships are based on mutual respect, resembling how one would like to be treated if diagnosed with the same condition. Some clinicians believe that an atmosphere of informality may best help the patient feel at ease. One way to create such informality is to refer to both patients and team members by their first names. This degree of informality is appropriate in patient care if everybody on the team, including the physician, are called by first names. Realistically, it is quite rare for a patient to refer to the physician by his or her first name even when invited to do so. To refer to the patient by their first name conveys a paternalistic posture and lack of gender sensitivity even if it is not intended to do so (8). This style of communication infantilizes the patient and can be perceived as rude and threatening to the patient's dignity. In contrast to those clinicians wishing to promote informality in the clinician-patient relationship, others believe that excessive informality erodes boundaries and leads to confusion (9). With increasing awareness of the need to empower patients, effort has been toward fostering balanced gender-sensitive egalitarian models of team care (10) that convey mutual dignity and respect.

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CHAPTER 45 - Multidisciplinary
Integrated Psychosocial and
Palliative Care