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REVIEW ARTICLE
Year : 2015  |  Volume : 18  |  Issue : 7  |  Page : 40-45

Ethics of physiotherapy practice in terminally ill patients in a developing country, Nigeria


1 Department of Physiotherapy, Exercise Immunology and Palliative Care Unit, University of Nigeria Teaching Hospital, Enugu, Nigeria
2 Department of Surgery, University of Nigeria Teaching Hospital, Enugu, Nigeria
3 Pain and Palliative Care Unit, Multidisciplinary Oncology Centre, University of Nigeria Teaching Hospital, Enugu, Nigeria
4 Department of Surgery, Division of Paediatric Surgery, College of Medicine, University of Nigeria Teaching Hospital, Enugu, Nigeria

Date of Web Publication1-Dec-2015

Correspondence Address:
N N Chigbo
Department of Physiotherapy, Exercise Immunology and Palliative Care Unit, University of Nigeria Teaching Hospital, Ituku-Ozalla, Enugu
Nigeria
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/1119-3077.170826

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   Abstract 


Physiotherapy has been widely defined as a healthcare profession that assesses, diagnoses, treats, and works to prevent disease and disability through physical means. The World Confederation for Physical Therapy describes physiotherapy as providing services to people and populations to develop, maintain, and restore maximum movement and functional ability throughout the lifespan. Physiotherapists working with terminally ill patients face a myriad of ethical issues which have not been substantially discussed in bioethics especially in the African perspective. In the face of resource limitation in developing countries, physiotherapy seems to be a cost-effective means of alleviating pain and distressing symptoms at the end-of-life, ensuring a more dignified passage from life to death, yet referrals to physiotherapy are not timely. Following extensive literature search using appropriate keywords, six core ethical themes related to physiotherapy in terminally ill patients were identified and using the four principles of bioethics (patient's autonomy, beneficence, nonmaleficence, and justice), an ethical analysis of these themes was done to highlight the ethical challenges of physiotherapists working in a typical African setting such as Nigeria.

Keywords: Developing country, end of life care, ethics, palliative care, physiotherapy, terminally ill


How to cite this article:
Chigbo N N, Ezeome E R, Onyeka T C, Amah C C. Ethics of physiotherapy practice in terminally ill patients in a developing country, Nigeria. Niger J Clin Pract 2015;18, Suppl S1:40-5

How to cite this URL:
Chigbo N N, Ezeome E R, Onyeka T C, Amah C C. Ethics of physiotherapy practice in terminally ill patients in a developing country, Nigeria. Niger J Clin Pract [serial online] 2015 [cited 2020 Aug 10];18, Suppl S1:40-5. Available from: http://www.njcponline.com/text.asp?2015/18/7/40/170826




   Introduction Top


End-of-life care has been defined as total care of a patient with an advanced incurable disease.[1] While it does not always imply that a patient is dying, it aims to help the dying patient to live good quality life till death. Physiotherapy, generally, is providing services to people and populations to develop, maintain, and restore maximum movement and functional ability throughout the lifespan.[2],[3] It is now being perceived as an essential part of the clinical pathway for terminally ill patients.[4] Physical therapists constitute part of the multidisciplinary team in the management of the terminally ill, offering services in various settings (inpatient, outpatient, hospice, home) in order to alleviate the physical and functional aspects of the patient's suffering.[3] While ethical issues regarding palliative care for patients in developed countries has been extensively explored and documented,[5],[6],[7],[8],[9] there is a dearth of similar work in developing countries. Similarly, studies discussing ethical issues in physiotherapy interventions in the end-of-life care are rare.[10]

In consideration of these reasons and the peculiarity of many developing countries with regard to their cultures, values, and resource limitations, it is important that ethical issues which these circumstances impose on physiotherapy practice in the African setting be examined. Using the Nigeria situation as example, this analytical review explores the ethical issues faced by physiotherapists as they provide interventions for the terminally ill patient in an African setting.


   Methods Top


In order to define the limits of publications on ethical issues unique to physiotherapy practice at the end of life in developing countries of Africa and also to define the broad issues of ethical interest to end of life physiotherapy practice all over the world, an extensive literature search was conducted in Medline via Ovid, Science Direct database and PubMed, as well as hand searches of relevant references using Google, Google Scholar, Bing, and Dogpile search engines. In addition, hand searches of the reference list of retrieved articles and back-chaining of other relevant articles was carried out. Search terms used included physiotherapy, terminally ill, end of life care, ethics, palliative care, developing country, Africa. The literature search for this review included both English and non-English language studies and was initially limited to 5 years but due to paucity of relevant literature, the search was extended to 15 years. A total of 24 articles were retrieved, but only 12 were found to be relevant to the topic. No studies on ethical issues at the end-of-life concerning hospital-based physiotherapists working in any developing country in Africa was found. A detailed review of these sparse but relevant literature defined six ethical and social themes which are either relevant to the physiotherapy care of terminally ill or may be unique to end of life physiotherapy care in resource-limited environment of Africa. An ethical analysis of these themes was done using the basic ethical principles of autonomy, beneficence, nonmaleficence and justice in order to define the challenges and limits of physiotherapy practice in a typical African environment.


   Discussion Top


Physiotherapy in the health care system in Nigeria

Nigeria, with a population of 178.5 million people,[11] runs a three-tier level of healthcare comprising primary, secondary, and tertiary levels of care as well as private and public health systems. While the local government authorities and state governments are solely responsible for the primary and secondary levels of care, the Federal Government is charged with policy issues and financing of tertiary level of care. Many state governments, private organizations, and religious groups are now also involved in tertiary care provision. Physiotherapy services are mostly embedded within the secondary and tertiary health care levels. Established as a profession since 1959 and recognized by the Nigerian Government in 1962, it was not until 1992 that the regulatory body, Medical Rehabilitation Therapists Board (MRTB), backed by Decree 38 of 1988/M9 LFN of the Nigerian Constitution, was inaugurated. The physiotherapist functions majorly as part of a multidisciplinary team of healthcare workers and receive referrals from both medical and nonmedical clinicians but most of their patient contact come from patients referred to them by physicians, and their activity is regulated by the MRTB Professional Code of Ethics.[12],[13] Contrary to situations in more developed countries such as the United Kingdom and The United States, in Nigeria, health care is funded largely out of pocket by the populace. While a National Health Insurance Scheme exists, it does not cover medical and physiotherapy cost for terminal illness such as cancer care. This directly affects physiotherapy service delivery since considerations of cost burden on patients and relatives form part of the determinants of frequency of physiotherapy sessions in terminal illness and in some instance, impact on the ethics of practice. Such is evident in situ ations where the physiotherapist may have to terminate beneficial supportive treatment due to the unavailability of fund thereby violating the principles of beneficence and nonmaleficence.

The role of physiotherapy in terminal illness

The terminally ill patient has rehabilitation needs bordering on limitations in activities of daily living, disruption to usual routines and roles, and anxieties about being a burden to others.[4] About 30% of cancer deaths are said to be related to issues with nutrition and exercise.[3],[14] According to Toot,[15] physiotherapists provide interventions on three levels viz., direct patient care, education of the patient-family care unit as well as fellow health professionals, and membership of the multidisciplinary team. Laakso [16] on the other hand, defined four levels of care involving the physiotherapist to include acute and post acute care, prevention, rehabilitation, and symptom control. Some of these interventions include assessment of patient's condition, pain alleviation, improving joint range of motion, preventing disability, optimizing function and mobility, increasing muscle strength and bulk, fatigue management, lymphedema management, respiratory care, infection control, management of all other distressing symptoms, improved quality of life,[17],[18],[19],[20] and providing cost-effective care in resource-poor settings. The use of heat therapy (heat lamps, hot packs) or cold therapy (ice compression wraps, ice packs)[21] for instance can contribute to pain alleviation and reduce pain drug requirements in these terminal patients. In addition, energy conservation techniques such as pacing activities and avoidance of physical stressors may help in managing fatigue commonly found in these patients. While physiotherapy does not aim at the restoration of premorbid functionality,[16] it gives some degree of independence, reducing caregiver burden, thus contributing to improvement in the quality of life of the terminally ill patient. Even when physical functionality is limited or in certain cases not possible such as in neurodegenerative diseases, psychological, emotional, and spiritual support of the patient is possible and must form the basis for continued productivity especially in cases where patients equate physical activity with productivity.[21] These roles provide their own challenges, are continually evolving, and ethical issues may arise during their execution.

Ethical and social issues pertinent to physiotherapy practice in terminally ill patients

First theme: Appropriateness and timing of referral for physiotherapy in terminal illness

How appropriate physiotherapy is for a terminally ill patient with limited resources is still debatable in a developing country such as ours. Physiotherapists are most often not the first point of contacts for patients. The decision to offer physiotherapy services may depend on the first contact healthcare provider and his level of awareness of the emerging field of palliative care physiotherapy. Some members of the health team may not consider such services necessary for the terminally ill patient. In the Nigerian environment, the perception of physiotherapy and knowledge of both healthcare workers and patients on the role of the physiotherapist in terminal illness are very limited, and this could be responsible for the delayed referral of patients to physiotherapy services.[17] Physiotherapy is often regarded as an optional extra that can come after other acute care management [22] but the need often become obvious when disease progresses, and the patient is not equipped to handle the complications of the disease or its treatments as end of life approaches.[23] In such late referrals, a patient may be eager to work with the physiotherapist but the limitations of physical complications of his illness and drug therapy may prevent effective physical therapy. Chances are that if physiotherapy was introduced earlier, cardiopulmonary function and muscle integrity, both of which are needed to maximize functional ability, would have been preserved. The principle of nonmaleficence should motivate health care workers to ensure that preventable complications are not allowed to develop in terminally sick patients.

Physiotherapy is an accepted cost-effective and beneficial means of managing most complications, especially for the dying patient.[17],[18],[19],[20] Early intervention may be appropriate regardless of disease stage and financial status. In Nigeria, many physiotherapists complain that referrals for physiotherapy for terminally ill patients are few and late.[17] Deciding when to or whether to commence physiotherapy services is a decision that ideally should be discussed in the initial multidisciplinary meeting for each patient. Basic ethical intuition motivates the healthcare provider to preserve life and health [24] but in a resource-poor setting, conflicts of judgment may set in leading to late or no referrals. In some instances, deferment of physiotherapy sessions could be considered ethical. When financial constraints become part of the considerations in terminally ill patients, the risk-benefit ratio can drastically alter. Decision on how to balance the principles of beneficence and nonmaleficence in such situations becomes very difficult. Is it morally justifiable to expose the dying patient to the extra cost of physiotherapy services? Decisions on questions as above should be made in conjunction with the patient if at all possible. If truly the dying patient is recognized as an autonomous individual, the health care provider must be much more considerate in seeking the opinion of the patients as to which treatment to forgo.[25]

Second theme: Managing the patient and family expectations

In the developed world, treatment at the end-of-life usually focus on patient's comfort and involve less aggressive therapies.[24],[26] In such environment, satisfying the patient's wishes is the most important target since patient's autonomy traunces every other ethical principle. Understanding the goals of terminal care in Western countries therefore is clearer than in Africa where other considerations often cloud decisions. In Africa, the paternalistic model of care predominates.[27] Treatment decisions are commonly made by healthcare experts and family relations. The justification for this pattern of care hinges on the principle of beneficence. While such pattern of care easily finds place in low literacy and resource limited environments like Nigeria, it often sacrifices patient's autonomy and makes room for considerations other than what the patient wishes. Empowering poor illiterate terminally ill patients with vital information which should aid them in giving informed consent often seem difficult or simply not feasible. Rowe and Moodley [27] believe that it is for such reason that South African patients encourage their doctors to assume the paternalistic role in their management, hence greatly undermining patient autonomy. It also provides avenues for unrealistic expectations of families and proxy decision makers which should be managed professionally to limit tension at this emotionally charged time.

Third theme: Information disclosure

The physiotherapist as described by the World Confederation for Physical Therapy is saddled with the responsibility of educating the patient on his care.[2] In the African setting, it is often the norm for patients not to be duly informed of the terminal nature of their disease. Truth-telling to the sick and dying patient is an unappreciated virtue and in some circumstances, discussion of death constitutes a taboo.[28],[29],[30] How much to tell without revealing that death is inevitable becomes a challenge and may affect the setting of realistic, attainable goals for this category of patients. This inevitably prevents patients from making informed decisions about their care. In Iran, families are known to request nondisclosure of diagnosis to patient, resulting in ethical dilemmas for health caregiver.[31]

Healthcare providers can occasionally constitute a stumbling block to the process of information disclosure and informed consent. According to an Iranian study by Kazemian and Parsapour,[32] just 35% of physicians believed patients should be told the truth about their illness, with half believing that disclosure be done under special circumstances. This is slightly lower than the 46.8% value in a Nigerian study by Nwankwo and Ezeome.[29] The Nigerian study did not seek the views of physiotherapists as to determine how this would impact on their practice on terminally sick patients.

Fourth theme: End point of physiotherapy services

Physiotherapy in terminal care appears not to have a well-defined end point. It can be applied throughout the continuum of care from the time of diagnosis to the end of life and may involve both psychological and physical aspects.[33] The aims of treatment are clear, but it could be argued that the specific point at which achievement is attained is uncertain.[22],[33] Physiotherapy will always benefit the patient even when the patient's stamina is low, and end-of-life is near. Several situations influence the termination of physiotherapy services in terminally ill patients, but the moral reason behind these decisions may be open to question. A patient may refuse to continue physical therapy because of the long duration of the sessions. In some situations, terminally ill patients may not be in good enough condition to make such decision but rather the significant other may be the person who determines the "too long or too strenuous session". The physiotherapist in such situation faces the dilemma to acquiesce to the patient's decisions knowing very well that the consequences of such is the disease progression or to seek for further ways of getting informed consent. In other situations, a depressed patient may opt to terminate all forms of treatment, including physiotherapy in order to hasten death. Depression in terminally ill patients is common and when decisions to stop treatment in those settings are allowed to stand without much effort, one can actually be acquiescing on ones duty to those patients who could be helped. That being said, a plan to challenge the appropriateness or morality of a decision to cease treatment in a terminally sick patient is one that need to be made with every caution and sensitivity to the patient's situation. A different moral issue may arise where the physiotherapist have to terminate treatment before some function was restored because patient could not continue to pay for services rendered. In resource-poor settings, treatment is often deferred or terminated to alleviate the financial burden on the caregivers. In these situations, the physiotherapist finds himself having to balance the ethics of his profession with financial considerations in the care of the patient.

Fifth theme: Culture and belief systems in end of life physiotherapy practice

Culture and belief systems have been observed to interfere with rendering acceptable treatment protocols in our setting.[34] Life expectancy in Nigeria is short and is estimated to be 53 and 55 years old for males and females respectively.[35] Death of young people are considered a taboo and the African does not accept the prediction of death.[27],[36] Even in the face of terminal illness, the African patients will continue to struggle to survive, hoping to postpone death as much as possible. This oftentimes make the setting of treatment goals with the patient's consent difficult since discussing end of life issues is not acceptable. It is a common occurrence for physiotherapists to hear statements such as, "I will walk again" from terminal cancer patients with spinal metastasis and paraplegia, or "I believe my God will see me through this illness". These statements are not only a reflection of strongly held belief in a supreme deity but also a rejection of death even when it is imminent. In Iran, such beliefs are noted to help patients face tough situations.[31] Such conflicting influence of spirituality often get heightened in the face of terminal illness and may affect the treatment process. The physiotherapist may be compelled to continue to provide care for reasons other than the objectively set goals while on the other hand they may depend on such positive outlook to achieve the goals aimed at improving the quality of life.

Another influence of our culture on the treatment pathway is the strong support offered by the extended family system. The disclosure of the terminal nature of the patient's illness may be greatly influenced by family members. Disclosure of the terminal nature of the disease to the patient may be perceived as uncaring and will hasten the death of the patient. Instead, such bad news should be disclosed to the family members who should be in better position to disclose to the patient.[27],[30] Situations may arise where the physiotherapist is asked to modify treatment procedures so that the patient does not perceive that death is imminent so as to sustain the latter's hope. Palliative care encourages incorporating family members in the plan of care for the dying patient but sets no definite boundaries on the influence of the strong knit extended family system present in this setting. Equally, due to the higher regard for the male gender in the African culture, treatment decisions are often made by older male family members. The therapist might be required to postpone treatment until such proxy decision makers are available to authorize treatment.

In the dying pediatric patient, our culture and belief systems can also impact negatively on the ethics of delivering physiotherapy practice. Consent for minors are usually sort from the parents or caregivers who in turn are largely influenced by our strong community ties. Our culture does not regard the child as a full person and therefore parents and guardians may view children as more easily dispensable in difficult situations. A family saddled with the care of several other apparently healthier children may consider it more expedient to beget another child or to focus their resources on the care of other children instead of wasting too much resources on a dying child. Families could refuse treatment for the child purely for emotional reasons. In some instances, these sick children are abandoned in the hospitals. Thus, parental consent might not be available to allow physiotherapy intervention for a terminally sick child, and there may be a need to seek court intervention if therapy is to continue. The rational for such drastic measures in terminal sickness will be difficult to justify.

In situations where consents are required, assent from the child is often not considered. The consenting parents or elders take decisions based on their own values, beliefs, and goals. The possibility, therefore, exists that a child may be under the influence of undue power by the consenting parent or relations.[37] Physiotherapy practice at the end of life for children, therefore, need to develop some form of assessment to determine if the child patient is carried along especially where the capacity to understand the situation rather than age is the pertinent issue.[37]

Sixth theme: Effect of long treatment sessions

The nature of physiotherapy practice allows the therapist to spend an appreciable length of time with the patient on each session, from initial assessment and through the treatment pathway. These sessions involve assisting the patient in activities of daily living and exercises, which encourage close interactions including massaging of body parts. The multiple sessions involved in physiotherapy treatments also increase communication between patients and physiotherapists.[6] Opportunities for bonding with the patient therefore exist. These interactions are not guided and may become emotional, having a negative influence on the treatment outcome. The physiotherapist is usually faced with a certain degree of unchecked intimacy with the patient and family members. This is heightened by the fact that at the end of life, when emotions are high, other healthcare providers may begin to wind down treatment but the physiotherapy services are retained to supervise issues such as proper positioning and respiratory care in the last 48 h.[38] Little or no attention has been paid to the ethics of this interplay of emotions between the physiotherapist and patient and family members. Defining boundaries is therefore necessary, and a code of conduct or code of good clinical practice may well be required to define the ethics of these interactions.


   Conclusion Top


Ethical issues regarding physiotherapy for terminally ill patients is a fertile ground for bioethicists to research and proffer solution to salient ethical issues embedded in the practice. The appropriateness of physiotherapy referrals, the best time for such referrals, the uncertain boundaries at which point to stop physiotherapy care as well as the unguided long therapy sessions involving close body contacts are worldwide global issues facing physical therapy at the end of life. Peculiar issues do arise in the African setting induced by such circumstances as strong extended family relations and its modulation of consent, financial limitations as well as cultural and belief systems. These issues are under-discussed in medical practice but pose great ethical concerns for the physiotherapist in the discharge of duties at the end-of-life.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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