The tracheostomy tube.
Subject: Right to refuse treatment (Ethical aspects)
Authors: Kirschner, Kristi L.
Smith, Joanne
Donnelley, Strachan
Pub Date: 03/01/1994
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 1994 Hastings Center ISSN: 0093-0334
Issue: Date: March-April, 1994 Source Volume: v24 Source Issue: n2
Accession Number: 15244437
Full Text: Joe, eighteen years old and unmarried, sustained a severe spinal cord injury in a motor vehicle accident. His arms and legs were paralyzed. He initially required mechanical ventilation, and later a tracheostomy. Three months after his injury Joe was transferred to a spinal cord unit several states away for his rehabilitative care.

Joe was eventually able to be weaned from the ventilator, but his pulmonary status remained shaky. He had an ineffective cough and required frequent assistance and suctioning to manage his secretions. Goals for his rehabilitation included educating him about his body so he could direct his care (range of motion, bowel and bladder care, transfers from bed into the wheelchair, medications, and the like). It was felt that Joe could eventually use mouth-controlled computer technology to propel his wheelchair, use the phone, monitor the TV, switch lights off and on, and operate a computer.

Before the accident, Joe worked as a supermarket packing clerk and lived with his mother and stepfather. He had finished tenth grade and earned a GED. He was described by his psychologist during his rehabilitation course as being frightened, anxious, and emotionally fragile, though not depressed. He met the staff's attempts to care for him with extreme opposition, often refusing therapies, medications, and treatments for the pressure sores that he had developed. He demanded to be allowed to smoke, despite his fragile respiratory status.

One of the goals for Joe's rehabilitation course was to remove the tracheostomy, if possible. With time and special respiratory management, his clearance of secretions improved. A "button" (or space holder for a tracheostomy) was eventually placed - the final stage prior to complete decannulation. At this point Joe had to rely on others only for help with coughing and oral suctioning to manage his secretions. If he should prove unable to conduct his pulmonary toilet adequately, die tracheostomy tube could easily be replaced at the bedside to allow for more aggressive suctioning.

Several nights after placement of the button, the resident on call was summoned to evaluate Joe for respiratory distress. His respiratory rate had increased and his blood gas indicated mild hypoxemia. He was having a great deal of difficulty managing his secretions, despite one-on-one attention from the staff for cough assistance and oral suctioning. The resident on call felt that the tracheostomy tube should be replaced immediately, but Joe refused. "I'd rather die than have that replaced," he said. The resident explained to him that it would be a temporary measure to insure clearance of secretions and appropriate oxygenation. Joe remained adamant.

Now what?

The resident on call is in a difficult position. A potential crisis is forcing a decision that could have long-term consequences for Joe. The medical crisis could likely be averted by replacing the tracheostomy tube, while without the tube, Joe's risk for respiratory failure is high and he could die. Realistically, are Joe and the resident prepared to make such a monumental decision in the middle of the night?

Let us first discuss the situation from Joe's perspective. It does not appear that Joe has made an advance directive or had ongoing discussions about the limits of care with his attending physician. While such a conversation could have provided some valuable insights into his current behavior, it does not seem to have taken place. We do know that Joe is young - just emerging from adolescence. It is well recognized that adolescents often have a sense of indomitability. He also has a history of angry, contrary behavior with the nursing staff and has frequently resisted taking his medications, attending his therapies, wearing his brace, and so on. As many of these issues relate to control, it is not surprising that an adolescent would find difficulty cooperating with the staff, particularly in light of his recent severe, permanent disability. Joe has without warning lost control over his motor abilities, his bowel and bladder functions - even his ability to cough. He is alienated not only from his body but from his family and support system, which are many miles away.

Furthermore, Joe's identity as a disabled person is undoubtedly still very much in evolution, and this has major ramifications for his ability to make decisions about the rest of his life. Does he have a clear perception of what it will be like to live with a disability at this stage in his recovery? One would think not. His perception of living with a disability has most likely been shaped by the attitudes and images of a society that has pitied and minimized the potentiality of persons with disabilities. While the psychologist has stated that Joe is not clinically depressed (which we would question), it is highly likely that he is actively grieving over his physical losses and experiencing fluctuating emotions ranging from denial to anger to despair. Finally, let us not neglect the impact that various medical factors, such as hypoxemia, physical discomfort, or medications may have on Joe's decisionmaking ability.

What about the resident's perspective? She does not have a prior relationship with Joe to draw upon. Although he is adamantly telling her he does not want the tracheostomy tube replaced, the resident has little time to sort through all the potential, complex factors that may be influencing Joe's judgment and decisionmaking capacity at this point. Not only does the resident have no ongoing relationship with Joe, she also lacks the input of the team psychologist to assess the clarity, rationality, or consistency of Joe's expressed wishes. It is also likely that the resident has had little experience approaching such issues and would feel a certain amount of insecurity and turmoil.

How should the resident proceed. Optimally, she would try, to temporize, which would buy time for further discussions regarding this issue and allow for other options to be explored. Attempts at cajoling, bargaining, and reasoning with Joe should be tried, and a middle-ground solution (such as aggressive pulmonary toilet and specialized cough-assistance by experienced rehabilitation personnel) should be taken. If this approach is not feasible or is simply unsuccessful, the resident will have to be prepared either to replace the tracheostomy tube against Joe's will, or watch him die of a treatable respiratory arrest. While neither option is particularly palatable, we would favor replacing the tracheostomy tube on a temporary basis. This tube can easily be removed later, after decisions about limits of care have been carefully made with full support services available. Joe's death, on the other hand, could not be undone.

Many experienced rehabilitation medicine professionals might reasonably recommend replacing Joe's tracheostomy tube against his wishes, if all else fails. The strategy of temporizing to meet the acute medical crisis and avoid violating Joe's decisional autonomy rights seems a sensible one. It is certainly important to recognize the difficulty, of the resident's position: her "rookie" status and ignorance of Joe's case history. It is also important to recognize the difficulty of Joe's plight: the deep personal crisis of a maturing adolescent who has had his life and world turned upside down by a devastating injury that has left him permanently paralyzed, with radically alleged prospects for the future. How intact is Joe, "decisionally" or otherwise?

This line of reasoning is ethically persuasive, yet I have a question. Why did Joe get into this particular situation in the first place? Three months post-injury, Joe was sent "several states away" for rehabilitation medicine care. Why? Were there not adequate rehab facilities closer to home? Presumably the hospital treating Joe had a special and nationally regarded spinal cord unit. Yet as the case study suggests, the spinal cord injury is not the only trauma Joe is facing. Understandably and characteristically, Joe is undergoing a deep and protracted existential crisis. His former, active self and his former world, with its opportunities for activities that gave meaning to his life, are shattered. He must now find a new active self and a new world of meaningful opportunities, under new terms of personal existence. Easier said than done. Moreover, how Joe faces and moves through this crisis will importantly determine his ability to cooperate in the rehabilitation regime.

How well is Joe served by taking him out of his home setting - away from family, friends, and regional landscapes - irrespective of the medical and professional benefits of the spinal cord unit? Might he not have a better chance of resurrecting himself, renewing an active personal life, and collaborating with a rehab team if he found himself amidst the old and familiar, rather than the new and alien? Are our selves so portable and disconnected from local settings, including intimate human others? Perhaps they are for a technologically sophisticated biomedicine that focuses dominantly on the body, coupled, with a bioethics mesmerized by the decisional autonomy of individual minds. But rehabilitation medicine - with its complex and necessary cooperative interplay of patients, families (friends), and rehab team professionals - knows better. It recognizes no mere minds, mere bodies, or selves radically independent of local and personal worlds.

Joe should be stabilized and sent to a care facility close to home. There he has a better chance of getting himself back together, body and soul. This is a case study of a dire crisis in Joe's life. It is perhaps also a case study of a crisis in how we deliver health care to ourselves.
Gale Copyright: Copyright 1994 Gale, Cengage Learning. All rights reserved.