ethics, health care team, pediatric care
P Bube. The Role of the Family in In-Patient Care: A Mostly Modest Proposal. The Internet Journal of Law, Healthcare and Ethics. 2002 Volume 1 Number 2.
There have been good medical and moral arguments in support of a team approach to patient care. Although the family is ostensibly a part of the team of heal care professionals, the fact remains that the family is often relegated to the periphery of actual in-patient care. This often has traumatic effects on the patient and family, particularly when the patient is a child. This essay argues that the model of prepared child birth, such as Lamaze, provides a better approach to greater family involvement with the professional team.
The Role of the Family in In-Patient Care
As an ethicist I have long been impressed by the moral arguments in favor of treating the whole person within the context of a health care team made up of professionals, patient, family, and loved ones. These arguments took on a personal dimension after the birth of our second daughter twelve years ago. Born with a cleft palate, she has undergone various surgeries for ear infections as well two cleft palate repair surgeries. Our family has been grateful for the concern and skill of the health care professionals who have worked with us, helping us understand how we can be part of our daughter's healing process.
In spite of the generally excellent care that our daughter has received, I have sometimes been troubled by certain medical practices that excluded my family from contributing to my daughter's treatment, making us feel powerless to respond to some of her—and our—physical and emotional needs. Two contrasting examples help illustrate what I mean.
Sometime after a local ENT specialist put tubes in our daughter's ears, one of the tubes had dislodged and needed to be pushed back into the ear drum opening during an office visit. Our daughter was terribly frightened and uncomfortable to have him poking around in her ear and she began thrashing and screaming so that he could not do his work. The physician had two assistants who could have held our daughter down but, instead, he suggested that I hold my daughter and comfort her while he worked on her. This arrangement worked out well: my daughter was reassured by my holding and soothing her; I did not feel so powerless in responding to my daughter's needs; and the physician finished his work without having to coerce a screaming child.
In contrast to this was the occasion of my daughter's cleft palate repair at 11 months of age. The anesthesiologist spent a few minutes with our daughter prior to surgery to help her become accustomed to him. Although this was a noble gesture, the surgical waiting area was so busy the anesthesiologist's efforts were largely wasted. When he came back to take our daughter to surgery, she was clearly frightened that a stranger was taking her away from us. Consequently, she was virtually dragged off kicking, screaming, and crying as though abandoned. Of course, my wife and I found it to be traumatic and wondered why we could not have accompanied her to surgery. Our daughter's trauma was compounded by the fact that she was kept in recovery for longer than medically needed because of the volume of surgeries and lack of staff. Although we asked that one of us be permitted to be with her in recovery, we were refused because of the feeling that we might hamper the health care professionals in their other duties, and that we might infringe upon the privacy of other patients. This ordeal left a lingering trauma on our daughter who, for more than a year after the surgery, would become very frightened whenever she saw my wife wear a shower cap that resembled the caps worn by the surgical team.
It may be argued that the second situation, unlike the first, does not allow for a reasonable way to include family members in treatment. Some health care professionals would say that in these situations family members not only can easily be impediments to treating patients, but that other patients' right to privacy must be maintained. I appreciate the professional and ethical concerns that motivate this view, and I would affirm there are medical and ethical limits to the contribution family members or other non-professionals can make to the healing process. Nonetheless, I think this view is finally overly simplistic and unimaginative.
I suggest that a realistic alternative to excluding family members from these sorts of situations can be found in the philosophy undergirding the prepared childbirth movement exemplified by Lamaze. Less than forty years ago, most fathers were kept out of delivery rooms for the same reasons that family members are now excluded from various phases of surgery—they might get in the way of the professionals' work and they might violate the privacy of other patients in delivery. Yet with Lamaze and similar programs, we have seen that fathers can be trained to be a valuable, supportive presence in the delivery room without “getting in the way,” and that relatively minor changes to physical space associated with preparation for surgery and recovery will accommodate involvement without compromising other patients' privacy.
A similar approach could be taken with other medical procedures, including various types of surgery. Family members can be offered the chance to become genuine partners in patient treatment so as not to impede the work of the professionals, and actually to free professionals to do what they are best trained for. In the case of surgery, family members could be instructed to accompany the patient through anesthesia; and could be present in the recovery area doing routine duties such as making a preliminary assessment of whether the patient is fully conscious. In addition, to offer a more radical proposal, a family member could even be invited—where facilities permit—to be present during surgery. Like prepared childbirth, there would need to be some training; but like prepared childbirth the benefits to patients, their families, and even the team of health care professionals, could well make the effort worthwhile.
Obviously, health care professionals can either include family members (or other significant loved ones) in the patient's treatment or they can virtually exclude them. To do the former empowers those who are intimately involved in the patient's overall care and creates a more conducive environment for holistic healing. To exclude family from the treatment process, even for well-meaning reasons, leaves family members feeling powerless and alienated from those who most need their support. Insofar as health care professionals are concerned with involving family members as team members in the care and healing of patients, it is important that they look for new ways to demystify as many aspects of treatment as possible and allow family members to participate responsibly in treatment.