Ethical issues commonly managed during rehabilitation

Author(s): Stanley F. Wainapel, MD, Karen Morice, MD

Originally published:09/20/2014

Last updated:09/20/2014

OVERVIEW AND DESCRIPTION

Although bioethics is a well-established specialty,1there has been little examination of the ethical dimensions of physiatric practice itself. A survey of the literature during the past 25 years is most striking for the scarcity of references to ethics specific to the rehabilitation process, its setting, its patients, and its professionals.2-7Yet physiatric clinical care and research are filled with ethical issues which need to be addressed on a daily basis. The rehabilitation paradigm, with its emphasis on an interdisciplinary team and the active participation of the patient in decision-making, varies considerably from the more traditional medical model of a paternalistic and relatively passive doctor-patient relationship.7This presentation will provide a brief overview of the principles of bioethics pertinent to physiatric practice.

Modern bioethics is based on three principles, which were outlined by the Belmont Report in 1978:8

  1. Respect for persons (autonomy for those with decisional capacity and protection for those lacking capacity)
  2. Benevolence and non-maleficence (do good, do no harm)
  3. Justice (equal treatment regardless of social, financial, sexual, or cultural factors)

These principles were formulated in response to the notorious medical experiments carried out during World War II, along with experiments such as those conducted on inmates at the Tuskegee prison, which became public in 1972. They are applicable to several aspects of physiatric practice including informed consent, determination of decisional capacity, dealing with patients who refuse treatment, termination of treatment, research, and education. The significance of following ethical principles in physiatry is reinforced by the fact that we are frequently dealing with vulnerable populations due to their disability, age, or a combination of both factors; moreover, patients with central nervous system involvement such as stroke, traumatic brain injury, and multiple sclerosis may have deficits in their decisional capacity

Informed Consent and Decisional Capacity

Informed consent and decisional capacity are virtually inseparable; together they constitute the foundation for ethical clinical practice. It is important to distinguish between the consent form included in the medical record by physiatrists performing procedures such as steroid or botulinum toxin injections, and informed consent itself. The former is simply a document which provides evidence that informed consent has been obtained, while the latter represents an interactive process between physician and patient, which involves giving patients sufficient information to understand the purpose of treatment, treatment options, positive as well as negative consequences, and the opportunity for them to indicate their understanding prior to giving or withholding consent.9 A capacity for effective decision-making is an essential element in the informed consent process for medical treatment. It must be distinguished from “competence,” which is exclusively a legal term, whereas decisional capacity is based on clinical assessment which can only be done by a physician. The patients whose capacity to make medical decisions are most commonly questioned include: elderly, mentally ill, and/or mentally retarded adults; patients with head injuries; and patients who object to a recommended treatment.4Lo 10 suggests three simple questions which the physician can ask when determining decisional capacity:

  1. Does the patient understand the disclosed information?
  2. Does the patient appreciate the consequences of the choices?
  3. Does the patient use reasoning to make his/her choice?

Decisional capacity of patients receving rehabilitation treatment may vary based on time of day, metabolic status, intercurrent medical illnesses, medications, pain level, and physical environment. Patients whose communication is affected by aphasia/dysarthria, or lack of understanding of the language being used will require alternative communication strategies for the former and interpretive services for the latter. Surrogate decision makers named in legal documents such as Durable Power of Attorney or Living Will become active if and when the patient no longer possesses decisional capacity. Physicians should become familiar with state laws dealing with Advanced Dirrectives, and when in doubt should obtain consultation with legal representatives or a bioethics team.4

One of the challenging aspects of the rehabilitation process is the role of the interdisciplinary team in formulating recommendations. Unlike traditional acute medical-surgical care, rehabilitation treatments are process-based rather than procedure-based. The patient’s decisional capacity needs to be regularly evaluated since there is a continuum of treatment rather than a series of isolated events such as diagnostic and/or therapeutic procedures. Also, the patient’s active participation and maximal effort are prerequisites for an optimal outcome. While determination of decisional capacity rests exclusively with the physician, the setting and communication of treatment goals involves all members of the rehabilitation team.

In institutional settings such as hospitals, nursing homes, or home health agencies there may be a conflict between the administrative requirements or standards for care and those of the rehabilitation team which could override a more realistic assessment of patient preferences and practical options.9Insuring a safe home environment as a primary goal for a home care agency could reflect caregivers’ fear of patient injury despite that patient’s desire for greater independence, even if it results in an increased risk. A similar scenario occurs in nursing homes or rehabilitation units whose administrative policies stress the need to prevent falls, while the rehabilitation team and patient strive for maximal independence in ambulation.

Refusing or Discontinuing Treatment

Respect for patient autonomy during rehabilitation includes the right to refuse treatment. Occasionally this can present the physiatrist with a literally life or death ethical dilemma, as illustrated in a 1989 article documenting the case of a C3 quadriplegic admitted to a rehabilitation unit who decided that he preferred to die rather than live as a quadriplegic.2Another situation where survival is threatened would be the stroke patient with dysphagia who refuses nutrition.11The prognosis for improvement of swallowing after acute stroke is initially unclear, though partial or even full recovery from dysphagia is common. Thus, an ethical conflict arises due to the patient refusing nutrition while the rehabilitation team are aware that there is a good chance for improvement over a period of weeks or months. Respect for patient autonomy does not also require respect for patient ignorance, so it is incumbent on the physician and rehabilitation staff to discuss these factors with patient and family so that they can make decisions regarding future quality of life with a realistic perspective. When refusal of treatment has potentially dire or even fatal implications, immediate referral for bioethics and legal consultations is indicated.

Fortunately, these extreme cases are the exception rather than the rule, and it is much more likely that a patient may decline to undergo inpatient or outpatient rehabilitation therapies. In this situation, even if medical/rehabilitation professionals are of the opinion that it offers major benefits and that there would be negative consequences without it, the patient’s autonomy must be respected as long as decisional capacity is not impaired. This capacity cannot be determined using a simple screening tool such as the Folstein Mini Mental Status Exam.4There are many valid reasons for refusing rehabilitation, including concerns about loss of home services, a patient’s need to provide care or support for a spouse with medical problems, preference for the home environment as location for rehabilitation care, and financial concerns.

Terminating rehabilitation should reflect a consensus including medical staff, patient, and family, but sometimes other factors may lead to discontinuing treatment such as reaching the limits of insurance coverage, lack of functional improvement, medical issues interfering with treatment, or inadequate participation or cooperation by the patient. Terminating treatment should be dealt with in much the same fashion as informed consent, with the physiatrist and/or rehabilitation team discussing the reasons for terminating treatment and alternative options such as therapy at home, transfer to longer term facilities, or outpatient follow-up care. Detailed chart documentation of this discussion is necessary, especially if the patient or family disagree with the decision. If indicated, the patient’s decisional capacity should be reassessed. If conflict persists after these discussions, it may be necessary to involve legal and/or bioethics consultants.

Ethics in Research and Education

Whyte6has explored some of the ethical ramifications of rehabilitation research as illustrated by efficacy studies. The concept of clinical equipoise is central to such research, meaning that there is a real uncertainty about whether or not a treatment is beneficial. The three concepts of autonomy, beneficence, and justice, as enumerated by Blustein8need to be scrupulously observed. Selection bias in the choice of subjects and selective use of inappropriate statistics to influence conclusions are particularly to be avoided.

The principles of bioethics should be considered a core competency and should be included in all physiatry residency curricula. Since many large academic medical centers have bioethics teams and consultative services, physiatrists should avail themselves of this resource when faced with challenging cases. Also, since physiatrists can offer a valuable perspective on chronic disease and disability, their inclusion and participation in bioethics committees is recommended.

Future Trends in Rehabilitation Ethics

In 2013 Hunt and Ells7developed a patient-centered care ethics analysis model specifically for inpatient rehabilitation which can also be utilized in outpatient settings. It is useful in aiding careful moral reasoning, safeguarding against taking sides, contributing to the credibility of the analysis and subsequent decision-making process, and helping to guide retrospective reviews. The six elements of this model are:

  1. Identify ethical issues.
  2. Collect ethically-focused information related to patient preferences in decision-making, goals, and treatment plans, including relationship considerations.
  3. Review and analyze, considering potential bias, and what might have been overlooked during the first two steps.
  4. Identify and weigh options.
  5. Make decisions based on the various options, making an effort to build consensus.
  6. Evaluate and follow up by retrospective analysis, which can be done at team meetings or during rounds.

The inclusion of ethical issues within the rehabilitation process as suggested in this model is an encouraging development, since they ought to be routinely part of physiatrists’ thinking. As new developments in medical and surgical care preserve the lives of many individuals whose injuries or diseases would previously have been fatal, it can be anticipated that a growing number of patients with severe physical disabilities will require physiatric care, and will bring with them an increasing number of complex ethical challenges.

REFERENCES

1. Beauchamp TL, Childress JF.Principles of Biomedical Ethics. 6th ed. New York, NY: Oxford University Press; 2008.

2. Ridley B. Tom’s story: a quadriplegia who refused rehabilitation.Rehabil Nurs. 1989; 14(5):250-253.

3. Scofield GR. Ethical consideration in rehabilitation medicine.Arch Phys Med Rehabil. 1993;74(4):341-346.

4. Venesy BA. A clinician’s guide to decision-making capacity and ethically sound medical decisions.Am J Phys Med Rehabil. 1994;73(3):219-226.

5. Carlisle JR. Informed consent in physical medicine and rehabilitation. The physician/patient relationship-the doctor as a fiduciary.Phys Med Rehabil Clin N Am.2002;13(2):213-224.

6. Whyte J. Treatments to enhance recovery from the vegetative and minimally conscious states: ethical issues surrounding efficacy studies.Am J Phys Med Rehabil.2007;86(2):86-92.

7. Hunt MR, Ells C. A patient-centered care ethics analysis model for rehabilitation.Am J Phys Med Rehabil.2013;92(9):818-827.

8. Blustein J. The history and moral foundations of human-subject research.Am J Phys Med Rehabil.2007;86(2):82-85.

9. Brody H. Shared decision making and determining decision-making capacity.Prim Care. 2005;32(3):645-658.

10. Lo B.Resolving Ethical Dilemmas: A Guide to Clinicians. 2nd ed. Baltimore, MD: Williams and Wilkins; 2000:80-88.

11. Sandman L, Agren Bolmsjö I. Ethical considerations of refusing nutrition after stroke.Nurs Ethics. 2008;15(2):147-159.

Author Disclosure

Stanley F. Wainapel, MD
Nothing to Disclose

Karen Morice, MD
Nothing to Disclose

Related Articles