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We still lack patient centered visitation in intensive care units

BMJ 2015; 350 doi: http://dx.doi.org/10.1136/bmj.h792 (Published 11 February 2015) Cite this as: BMJ 2015;350:h792
  1. Samuel M Brown, director, Center for Humanizing Critical Care, Intermountain Medical Center, 5121 South Cottonwood Street, Murray, UT 84107, USA, and assistant professor, pulmonary and critical care medicine, University of Utah School of Medicine
  1. samuel.brown{at}imail.org

Weak and paternalistic arguments are still being used to restrict family visits to patients in intensive care, writes Samuel M Brown

Tom, my friend’s father, unexpectedly had a cardiac arrest at age 68. Flash pulmonary edema spiraled out of control in the ambulance as it rushed him to the hospital. Although chest compressions and intravenous epinephrine (adrenaline) restored his circulation, Tom then lay for three days in the agonizing uncertainty of coma after cardiac arrest.

Despite some hope from therapeutic hypothermia,1 2 we physicians at the intensive care unit (ICU) are mostly powerless to treat neurological injury after cardiac arrest. So we wait our three days, hoping that closed eyes will open again. We join families in a desperate, powerless yearning that these patients will once more speak and think and love.

I couldn’t find words for my anger when my friend called to explain that hospital policy barred Tom’s wife and children from his bedside as he lay, comatose, in hospital. No more than two visitors for 20 minutes at two hour intervals for a maximum of five times a day, the dehumanizing policy stipulated. My friend explained how desperately they wanted to be at Tom’s side and how mystified they were by the restrictions. As life drained from Tom the clinicians forced his family to abandon him for most of each day.

After the three day vigil Tom’s family let him finish his mortal course in a natural death. But the brutality of their exclusion from what had, in retrospect, been Tom’s dying bed poisoned their bereavement, possibly for years to come.

It’s been a decade since a call to open ICUs to families was published in JAMA,3 and we shouldn’t have to say it again. But recent surveys and the experience of thousands of families like Tom’s have shown that we still do.4 Anecdotally, some hospitals have established places for the family’s presence once death is certain, but, as in Tom’s case, death generally comes uncertainly.5 By the time death is truly imminent the damage from excluding families may have already been done.

Clinician centered organizational practices have been shown to contribute6 to post-intensive care syndrome7 among family members, including substantial anxiety and post-traumatic stress disorder.8

Debilitating “bed rest” and the false protection of paternalism

In the past, clinicians universally restricted ICU visitation because they believed that patients should not be stimulated during illness—the same philosophy that led to debilitating “bed rest.” (A related paternalistic argument held that it was better for families to be separated from ailing patients, despite their objections, to avoid over-stimulating the family members.) No substantial science ever stood behind this obsolete conception. On the contrary, studies have shown improved physiological, psychological, and satisfaction outcomes from patient centered visitation.3 9

Two years ago—in light of cases like Tom’s, complaints from patients and families, and interest in patient centered care—our ICU decided to limit visitation only if the patient or family requested it or for specific procedures. My clinical experience has improved substantially as our ICU has welcomed family partners, and I feel sad now when they are not present. I love having them as full partners in care; their presence keeps the patient, and me, human.

As policy makers, clinicians, and reformers move to create patient centered care and to engage patients and families,10 it’s hard to imagine a better target for intervention than physical barriers to participation. We cannot coherently advocate engagement while employing clinician centered visitation. Restrictive visiting hours reflect a brutish paternalism that has no place in contemporary medicine. Such policies strip patients of their relationships—the core meaning of their lives—when life is most threatened.11 12

Open, patient directed visitation

Other than inertia and the remnants of paternalism, those who oppose it cite nurses’ satisfaction and patient safety as barriers to patient directed visitation. But those reservations have lost any credibility that they once might have had. The only real risks from patient directed visitation are nurse burnout and the possibility of errors from interruption or distraction. But careful planning and changes to clinicians’ expectations can prevent both. What had seemed impossible becomes probable and then routine. Such has been the experience in our ICU with open, patient directed visitation.

Trade-offs exist in visitation, as they do everywhere. Different patients want distinct levels of visitation, not all possible visitors are welcome at the sickbed, and visitors may create noise that disturbs other patients.12 Improved ICU architecture, management of noise levels, and collaboratively developed visitation plans can tackle these trade-offs directly, in a patient centered framework. Whatever the solutions are, decisions belong primarily in the hands of patients and families: any restrictions must arise from them.

Restrictive, clinician centered ICU visitation policies are cruel and unnecessary. There are no more excuses for managing what may be a patient’s last days under a regime fit for a prison.

Notes

Cite this as: BMJ 2015;350:h792

Footnotes

  • Competing interests: I have read and understood the BMJ policy on declaration of interests and have no relevant interests to declare.

  • Patient consent not needed (patient anonymised, dead, or hypothetical).

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

References

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