The Advance Directive Navigator: A catalyst for change and better care

by Dawn Beaty-Edwards and Michaella Kinloch

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We propose that hospitals create a position on their staff for someone who will “navigate” the patient through the process of creating an Advance Directive for themselves, and navigate the Directive itself through its correct implementation.

Advance Directive documents should enable the patient, not the health care providers or others, to determine their care, with particular concern over care at the end of life, to be able to determine for themselves in advance when enough is enough.

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But do the documents in fact function that way? One of us, in direct clinical experience, has often noted many instances in which advance directives are not followed. Too often at the very moment in which the patient’s Advance Directive should become functional, they are ignored or countermanded by decisions of family or care givers, exactly what the Advance Directive is intended to prevent. The Directive becomes an exercise in violation of the principle of patient autonomy.

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Why does this happen? The circumstances are multiple:

  • The tasks of finding out if a patient has provided an Advance Directive, understanding it, and seeing that all who should know of it do in fact know of it, can be tasks that are not assigned to anyone in particular, not anyone’s specific job, but merely left up to whoever might be around and available. It is an example of “if it’s everybody’s job it becomes nobody’s.”
  • Doctors can, and do at times avoid following the Directive.
  • In an emergency situation the MD’s default is, quite rightly, to attempt to preserve life, even if may seem futile. Even when time is less pressing they can still see following the Directive as time consuming.
  • They can see the Directives as interference in their work, feeling that they know what is best for the patient.
  • Doctors may have an interest in medical research and experimentation, but those are not the same as treatment. While the horrors of the Tuskegee experiments are long past, we must remain ever vigilant against even the smallest violation of ethics in this matter.
  • There is the possibility of patient care being influenced by, distorted by, the interest in learning more about a condition. The patient has the right to say they do not wish the doctors to “learn on me” if that is going to affect their care in ways they do not want.
  • Doctors and other clinicians do not always fully inform patients to enable them to make the best decisions for themselves, or do the same for family or appointed surrogate decision makers. Rather, they may edit what they say, speaking of what they believe, sincerely, is in the patient’s best interests. Unfortunately, this is almost inherent within the structure of health care, for without the massive knowledge base of a physician, how can a patient even know what questions to ask, let alone what to make of what they are told; how can they know what it is they are not being told. If clinicians, perhaps only intending to encourage, downplay negative outcomes, then the patient cannot be expected to make the best decisions.
  • Consent often done at the last moment, when patient is least able to deal with the issue, most vulnerable, such as when they are “hostage to surgery.” For example, the lung transplant patient, fully prepped by the team for surgery, who was told that such soft tissue transplants are not considered curative, but only a means of extending life for a limited span, but was told this only moments before surgery. Might they feel a pressure to carry through with the procedure even as their first doubts arise?
  • R.N.s at the bedside have little time to explain or assist in creating Advance Directives, especially in the early stage of admission, and they may or may not have the necessary documentation available to them.
  • Sadly, it must be recognized that in the current fee-for-service environment doing more does in fact generate greater revenue that doing less.

Without some change to the system of the use of Advance Directives in hospitals it is likely the problem will only worsen. An aging population will have greater end-of-life care needs. As the cost of health care is already in large part of function of the political climate, and budgets are under increasing stress, adherence to what may seen as non-essential elements of care, perhaps peripheral to core medical matters, is less likely to be maintained.

The key is a fully informed honest assessment about the patient’s condition, prognosis, and all potential outcomes, not downplaying the harsh outcomes of death, disfigurement, disability, or dependence upon mechanical devices, but how does this come about? We are proposing the creation of the Advance Directive Navigator staff position. Their specific functions would be multiple:

  • Educate the patient as to options.
  • Assist the patient’s understanding of what to expect in possibly approaching the end of life.
  • Assist the patient in the process of creating the actual Advance Directive document.
  • Ensure that the institution and its staff are aware of the patient’s directions, including entering the directives on any EMR.
  • Advocate for following those directions. It can be necessary for the Navigator to make the health care team see that consulting the patient’s Directives is an essential part of the job, for which time must be made
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We see it working in this way:

  • To avoid the phenomenon of “if it’s everybody’s job it becomes nobody’s,” make this a specific job position with recognized title, responsibilities, and authority. This is not to be a mere add on to an existing position, but a position in its own right.
  • The patient would be connected to the Navigator at the earliest opportunity, possibly even before admission if the situation warrants, such as at pre-admission testing or during office visits.
  • The Navigator researches the patient’s situation and determines their desires. From this the Advance Directive document itself is created in collaboration with the patient.
  • The patient’s health care team is informed of the Directive, through all possible channels.
  • The Navigator carefully observes the process of the patient’s care, always being aware of the patient’s condition and who might be involved in their care. They would also stay in contact with the patient, continuing to inform and advise, so long as that is possible.
  • The Navigator will inform the team of the provisions of the patient’s Directive, and do all that might be necessary to see that directives are followed, including reference to ethics consults. In this they would need to be a bridge between the Ethics Committee and those providing palliative care.
  • The Navigator, or a delegate, would be on call for needs as they arise.
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In order to function this way the Navigator would need to be given certain authorities:

  • They must have full access to patient’s records, and unrestricted access to patient themselves.
  • They must be allowed to speak with any member of the health care team.
  • They must be allowed to round with the team.
  • They must be allowed to report all violations of the Advance Directive to higher management levels.
  • They should be able to function independently. To enable this the position should be created as not reporting to any one clinical department, but rather to a neutral office such as that of Patient Relations.

Who would the Navigator be? Certainly the successful Navigator would require some very strong skills. We would suggest looking at those with clinical experience, ideally some in a palliative care setting, while also having training in bioethics. An understanding of the hospital organization will be essential, as will strong communication capabilities.

There are certainly going to be barriers to instituting this, and it is therefore necessary to consider what can be done to counter the objections.

  • Certainly the cost of another hospital staff position would be raised in objection. However, it should be noted that, since the functions of the position are restricted, even a larger institution may need only one or a very few people in such a position, their time shared over many patients. The actual capacity may vary by institution, based on patient population, and would have to be determined by each institution for itself.
  • The position may be seen as not really part of the health care team but rather “on the patient’s side” in an adversarial situation. This need not be. The institution and members of any health care team should be trained to see this as a means by which the patient’s wishes can be better understood and more readily followed. Unless the attitude of a team member is essentially ‘anti-patient,’ simply not respecting patient autonomy — in which case there is a much larger problem — then this should be possible. They may even come to see it as a means by which they are relieved of a difficult and worrisome task. In any event, it has already been largely accepted that an R.N.’s job can require them to function as a patient advocate, so the principle is already in place (even if not always respected.)
  • The objection can be made that it is yet a further complication in patient care. Admittedly, this is true, but it is a necessary refinement, or enhancement, one might say, because following the patient’s wishes is a core element of the care.
  • There may be the opinion that existing procedures and documentation are doing the job quite adequately. It would be necessary for each institution to carry out a critical self-examination to establish if that is really the case.
  • There can certainly be issues of trust within the patent community. Might the position be seen as a means of serving the institution’s wishes, or those of the physicians, and not the patient’s? This could be difficult to overcome except through demonstration of success.
  • Members of the patient’s family may have the interest of ‘keeping them alive no matter what must be done,’ which can be, even with best of intentions and founded in love, in conflict with the Advance Directive, and the situation can become quite volatile, with the family’s anger focussed very specifically, personally even, upon the Navigator. However, that anger could well exist in any event, and might it not be better to relieve the clinical care members of the team from facing it, and so give them a better chance to do their work? This may in fact be a benefit, in that those members will be less likely to avoid adhering to the provisions of the Advance Directive if they are not having to face emotional family members on the matter.
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No solution is perfect, and there are weaknesses still.

  • Does the creation of such a position in effect this lessen the responsibility of health care team to be active in following patient directives? That is, it becomes someone else’s job, and therefore the Advance Directive becomes if anything less visible? That may be how it could develop, but the very fact of the position should, if properly implemented, keep the Advance Directive very much in the foreground. Much would depend on how the position is managed, how it is staffed. No job is immune to poor fulfillment of its duties.
  • Might it be functionally restrained in scope by existing institutional Advance Directive documentation? It must be clear that such form documentation is only suggestive to the patient, not a requirement or a limitation, and individual needs and desires must be accommodated.

Overall we believe that the creation of such a position would do much to ensure that patient’s wishes at the end of life, as expressed in their Advance Directives, are followed.

Michaella Kinloch is Director of the Standardized Patient Program at the Lewis Katz School of Medicine at Temple University, where she is also a student in the Urban Bioethics Program.

Dawn Beaty-Edwards is a Registered Nurse at Temple University Hospital and a student in the Urban Bioethics program.