OVERVIEW AND DESCRIPTION
Physiatrists are rehabilitation specialists trained to care for patients with complex medical conditions, including brain injury, neuromuscular disorders, spinal cord injury, musculoskeletal injuries, pain syndromes and cardiopulmonary disorders. As the leader of an interdisciplinary team, physiatrists are accustomed to actively engaging multiple clinicians simultaneously and empowering patients in key decision-making processes. Because this unique paradigm is not typically employed in other areas of medicine, it is imperative that physiatrists have a firm understanding of the possible ethical scenarios they may encounter. This article will provide an overview of bioethical principles and how they are applied within the field of physical medicine and rehabilitation.
In 1978, the Belmont Report was published which outlined three main bioethical principles which ultimately became accepted by all medical fields:1
- Respect for persons (autonomy for those with decisional capacity and protection for those lacking capacity)
- Benevolence and non-maleficence (do good, do no harm)
- Justice (equal treatment regardless of social, financial, sexual, or cultural factors)
Furthermore, the American Medical Association Journal of Ethics specified five ethical considerations in rehabilitation:2
- Scarce resource allocation and the potential for discrimination against disabled people
- The ethics of accommodating people with disability and chronic neuromuscular disorders, including medical settings
- Identifying optimally inclusive nomenclature and terminology (e.g., “physical diversity” rather than “disability”)
- Conflict between the goals of promoting acceptance and accommodation for persons with disability on one hand and securing resources for restoration of functional efficiency and meaningful mission on the other hand
- The ethics of rehabilitating persons with neurological and behavioral disorders with nosognosia (deficits of awareness), in which maximizing rehabilitation may mean abandoning or overriding patient autonomy.
These ethical considerations are important to address as it helps construct public health policies promoting greater diversity, tolerability, and functionally appropriate environments for patients who are often poor, underserved, marginalized, and physically disabled.
Several aspects of physiatric practice are applicable to the aforementioned ethical principles and considerations, including (A) informed consent and determination of decisional capacity, (B) addressing patients who refuse treatment/discontinue treatment, (C) providing patient centered care and justice, and (D) research/education.
A. Informed Consent and Decisional Capacity
Informed consent and decisional capacity are virtually inseparable; together they constitute the foundation for ethical clinical practice. Informed consent represents an interactive process between the physician performing the procedure and the patient. This process provides patients with information regarding the purpose of treatment, treatment options, risks and benefits of the procedure, and the opportunity for them to indicate their understanding prior to giving or withholding consent. Once consent is provided, a document reflecting this discussion is signed by both patient and physician and is included in the medical record.
Consent for research purposes is obtained in order to carry out research studies in an informed setting. Research consent includes a description of the investigational study, the possible risks and benefits, contact information for study staff, and status of the study being reviewed by an institutional review board. It is important to note that both informed and research consent are for ensuring patient safety, and allows the patient or healthcare proxy to partake in the decision making process.
Informed Versus Research Consent
|Informed Consent3,4||Research Consent4|
|Typically used for Procedures|
1. Explanation of Proposed Procedure
2. Diagnosis (suspected, ruling in/out)
3. Alternative Procedures
4. Risks and Benefits of Proposed Procedure
5. Risks and Benefits of Alternative Procedures
6. Appropriateness of Proposed Procedure
|Used for research purposes|
IRB, 1974 National Research Act Require:
1. Disclosure of Information
2. Voluntary Decision Making
3. Competency of patient or surrogate to make decisions
US Federal Regulations Require:
4. Explanation of Risks and Benefits
Usually requires IRB approval
Minimization of Coercion/Undue Influence5
Consideration of vulnerable population at hand; children, pregnant, immigrants, prisoner, special populations, etc.)5
Guarantee protection, data privacy, and rights, confidentiality of participants, especially vulnerable populations5
Competence and capacity are often used interchangeably in clinical practice, but it is important to distinguish them. Competence is a purely legal concept which can only be formally determined through legal proceedings. Capacity is determined by a physician, and is an essential element in the informed consent process for medical treatment. The patient populations whose capacity to make medical decisions are most commonly questioned include: elderly, mentally ill, and/or mentally disabled adults; patients with head injuries; and patients who object to a recommended treatment.6 Lo7 suggests three simple questions which the physician can ask when determining decisional capacity:
- Does the patient understand the disclosed information?
- Does the patient appreciate the consequences of the choices?
- Does the patient use reasoning to make his/her choice?
Decisional capacity of patients receiving rehabilitation treatment may vary based on a number of different factors including:
Six Factors Influencing Decisional Capacity of Patients Receiving Rehabilitation Treatments
|Time of Day||Pain Level||Medications|
|Intercurrent Medical Illnesses||Metabolic Status||Physical Environment|
Patients whose communication is affected by aphasia/dysarthria, or impaired comprehension of the language being used will require alternative communication strategies for the former and interpretive services for the latter.
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. Furthermore, while determination of decisional capacity rests exclusively with the physician, the setting and communication of treatment goals involves all members of the rehabilitation team.
Surrogate decision makers named in legal documents such as Power of Attorney or Living Will become active if and when the patient chooses to and/or no longer possesses decisional capacity. Physicians should become familiar with state laws dealing with advanced directives, and should not hesitate to consult legal representatives or a bioethics team when necessary.6 It is also recommended for physiatrists to obtain next of kin and health care proxy information to protect patient information and privacy.
In institutional settings such as hospitals and nursing homes or home health agencies, there may be a conflict between the administrative requirements for standards of care and those of the rehabilitation team. However, physiatrists and the interdisciplinary team are positioned to provide a more realistic assessment of patient preferences and practical options.8 Insuring 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.
B. Refusing or Discontinuing Treatment
Respect for patient autonomy during rehabilitation includes the right to refuse treatment. Occasionally this can present the physiatrist with an ethical dilemma, as illustrated in an article published in 1989 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.9,10 Thus, an ethical conflict arises due to the patient refusing nutrition while the rehabilitation team is aware that there may be a clinical improvement over a period of weeks or months. Therefore, it is incumbent on the physician and rehabilitation staff to discuss these factors with the 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 consultation is indicated.
More commonly, physiatrists encounter patients who 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.6 There 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
- Financial concerns.
Terminating rehabilitation should reflect a consensus amongst medical staff, patient, and family. However, other factors may lead to discontinuing or changing 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 or changing treatment should be approached by 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.
Often times, patients with severe impairments such as spinal cord injuries and/or traumatic brain injuries, find it difficult to conceive of their “new normal” or life after their injury. It is the role of the physiatrist to guide patients and their families through these changes.
C. Ethics in Patient Centered Medical Care and Justice
In their role as the leader of an interdisciplinary team, physiatrists develop personalized plans of care for patients with disabilities in order to optimize their quality of life. Physiatrists must carefully and judiciously consider the following seven core elements of patient centered care outlined by the New England Journal of Medicine in 2017:11
- Mission and values aligned with patient goals
- Care is collaborative, coordinated, accessible
- Physical comfort and well-being are top priorities
- Patient and family viewpoints respected and valued
- Patient and family always included in decisions
- Family welcome in care setting
- Full transparency and fast delivery of information
Physiatrists need to also address the many clinical barriers patients may encounter in order to ensure justice is provided. Jonsen et al.12 proposed that these clinical problems can be subdivided as four priorities or topics to examine, review, and manage in the course of the patient’s care:
- Medical indications
- Patient preferences according to the principle of respect for autonomy
- Assessment of patients’ expected quality of life
- Context, such as economic constraints, standard operating and laws
At times justice can be difficult to achieve for patients who are differently abled. It may be challenging to reach consensus about a patient’s treatment plan because health care clinicians may rate the quality of life of patients with disability or chronic illness lower than the patients rate it themselves,12,13 fostering disagreement between patient and treatment team. This ultimately places these patients at a disadvantage. Recently there has been a paradigm shift in medicine toward a more patient-centered approach.
D. Ethics in Research and Education
Whyte14 has 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 Blustein1 need 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.
A recent article by Frontera15 discusses how scientific article publication has been growing, and is becoming ever more important in the field of physical medicine and rehabilitation. This requires physiatrists understand the elements of scientific article writing, levels of scientific evidence, current rules of scientific reporting, and the importance of preventing scientific misconduct.15
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 a bioethics team with 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.
In terms of graduate medical education, residents face varying levels of comfort and mastery with performing procedures as their training progresses.16 There is still the ethical dilemma for physicians to balance academic education and competency with patient care and safety. Residents learn to balance evidence-based research and expert opinion with the patient’s level of acceptance or denial of her/his situation. Residency education involves learning to educate patients on best practices. It is not uncommon for physicians to have to re-educate patients if they have been exposed to incorrect community hearsay or misinformation.16 Finally, residents, like their attendings, face barriers with access to healthcare and a lack of resources necessitating enhanced teamwork to ensure justice for their underserved populations.16
E. Future Trends in Rehabilitation Ethics
In 2013, Hunt and Ells17 developed the Patient-Centered Care Ethics Analysis Model for Rehabilitation (PCEAM-R) to guide ethical rehabilitative care given the complexity of the care team, patient’s degree of impairment/disability and a variety of possible interventions.
The six steps of the PCEAM-R are:
- Identify the ethical issue(s) to address: What is at stake and for whom?
- Collect information: What do we need to know to be able to evaluate the issue(s)?
- Review and analyze: Do we need to reformulate the issue(s) and what can help us better understand it?
- Identify and weigh options: What are our options and what rationales support them?
- Make decision(s): What is the best option and how should we implement it?
- Evaluate and follow-up: What was the outcome and how can we learn from it?
This six-step process for ethical decision making is theoretically grounded in the International Classification of Functioning Disability and Health and has a sufficiently detailed list of questions to provide a comprehensive and balanced assessment of each patient’s situation.17 This may be the best method for the practice of physiatry to ensure justice for all patients of differing abilities.
The inclusion of ethical issues within the rehabilitation process 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.
- 1. Blustein J. The history and moral foundations of human-subject research. Am J Phys Med Rehabil.2007;86(2):82-85.
- Kirschner KL, Stocking C, Wagner LB, Foye SJ, Siegler M. Ethical issues identified by rehabilitation clinicians. Arch Phys Med Rehabil. 2001;82(12)(suppl 2):S2-S8.
- Kakar H, Gambhir RS, Singh S, Kaur A, Nanda T. Informed consent: corner stone in ethical medical and dental practice. J Family Med Prim Care. 2014;3(1):68‐71. doi:10.4103/2249-4863.130284
- Shah P, Thornton I, Hipskind JE. Informed Consent. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK430827/. Published March 30, 2020. Accessed June 2, 2020.
- Manti S, Licari A. How to obtain informed consent for research. Breathe (Sheff). 2018;14(2):145‐152. doi:10.1183/20734735.001918
- 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.
- Lo B. Resolving Ethical Dilemmas: A Guide to Clinicians. 2nd ed. Baltimore, MD: Williams and Wilkins; 2000:80-88.
- Brody H. Shared decision making and determining decision-making capacity. Prim Care. 2005;32(3):645-658.
- Ridley B. Tom’s story: a quadriplegia who refused rehabilitation. Rehabil Nurs. 1989; 14(5):250-253.
- Sandman L, Agren Bolmsjö I. Ethical considerations of refusing nutrition after stroke. Nurs Ethics. 2008;15(2):147-159.
- Elements of Patient-Centered Care. NEJM Catalyst. What is Patient Centered Model? [Internet] https://catalyst.nejm.org/doi/full/10.1056/CAT.17.0559. Published January 1, 2017. Accessed June 6, 2020.
- Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 7th ed. New York, NY: McGraw-Hill; 2010
- Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977-988.
- 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.
- Fronter WR. The Scientific Article and the Future of Scientific Rehabilitation. The Journal of the International Society of Physical and Rehabilitation Medicine. 2018;1:4-8.
- Miller JE, Camacho-Soto A, Odonkor CA, Ferker S, Mukherjee D. Ethical concerns identified by physical medicine and rehabilitation residents. PM&R. 2015;7(4):428-34.
- Hunt MR, Ells C. A patient-centered care ethics analysis model for rehabilitation. Am J Phys Med Rehabil.2013;92(9):818-827.
Original Version of the Topic
Stanley F. Wainapel, MD, Karen Morice, MD. Ethical issues commonly managed during rehabilitation. Originally published: 9/20/2020.
Erika Trovato, DO, MS
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Tiffany M. Lau, MD
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Lawrence Chang, DO, MPH
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Karen Pechman, MD
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