For it is not just we, the ill, who are responsible for our experience of illness…

When we judge ourselves or our loved ones to be ill enough to seek medical advice, we are usually prepared to place ourselves in the hands of another to receive care and be relieved of what worries and ails us. The illness experience often awakens feelings and wishes associated with childhood dependency. Doctors are often, without justification or not, the targets of our and our families’ anger, fears, and excessive hopes. Our fantasy is someone with a good bedside manner, recognized in his field, exquisitely competent impeccable decision making skills, and knows just how to balance patient autonomy and professional judgement.

The fault often lies with neither our frustrated selves nor with the doctor. To some degree, simply by virtue of being a practitioner of the medical arts and the locus of cultural themes of suffering, the doctor is going to be on the receiving end of emotional expressions of unrelieved human distress. Who or what can or will replace the power of the art of medicine and faith in the physician as their status and expertise is challenged by pharmacy clinics, the internet, and consumer based pharmaceutical advertising among other forces is yet to be seen.

For it not just we, the ill, who are responsible for our experience of illness, but the professionals who provide care. What might be some characteristics that the “good-enough” professional caregiver will need to act effectively for us?

THE GOOD-ENOUGH PROFESSIONAL
Understanding the existence, power, and importance of the archetype of the healer. As the belief in the curative powers of the archetypal physician is shaken, the concerned person who seems to care and truly wants to listen to what is wrong may be handed the healer’s robe.

Recognizing that illness is a form of suffering that touches many dimensions of the human spirit arid individual and family lives. Today a narrow focus on any one aspect of chronic illness can leave many individuals and families without the shelter that either religion or medicine have provided in the past.

Accepting the inextricable connections between disease, illness, and suffering. It is the task of those who are oriented toward healing as well as cure to help patients and families understand that symptoms of disease, of illness, and of suffering are often indistinguishable from each other.

The professional caregiver must help people learn methods and employ meanings that can prevent or lessen distress, whatever their source.

Acknowledging that bio-medical treatment is only one of many forms through which care can be offered and that it can support other sources of care.

Collaborating with those who have the skill and patience to listen and discuss as well as with those who know how to wield a scalpel or read a scan.

Ensuring that patients experience some regularity and stability in those who provide care.

Creating an environment and context for listening and care that makes it easy for individuals and families to express distress and receive solace when they feel the need for it. Much of the effectiveness of traditional religious institutions, as well as the twelve- step programs, comes from their accessibility. When that disappears, comfort is diminished.

Encouraging and respecting people’s own interpretations of the cause of their suffering and the means through which they might get some relief.

Appreciating the threats that illness brings to individual and family roles, activities, relationships, identities, and selves. Most physicians or medical teams intervene primarily at the level where illness is construed chiefly as the loss of particular abilities or functions unrelated for the most part to an individual’s or family’s larger life projects.

Accepting the responsibility of being invited into and learning from the worlds of those who live with chronic illness, however painful, unchanging, or challenging those worlds seem to be.

I have been extraordinarily fortunate that the 4 physicians primarily responsible for my care for over four decades have been exemplars of these qualities. They have supported me within the philosophical context and structure of care of what was originally called Harvard Community Health Plan (now Harvard Vanguard), for which my father was their original pediatrician.

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