Advancements in health care have resulted in elaborate treatments and cures all over the world. Advancements have contributed to problems at times for the terminally ill who need palliative care. Futile treatments have demonstrated to defuse the symptoms of the disease without curing. In such scenarios physicians are forced to prolong material life of their patients, keep them away from death and at the same time deprive them from quality of life. Moreover, families exhaust their material resources for the treatment of their loved ones but to vain. Thus, decisions to limit treatment such as advance directives (AD) are a need in this age of modern medical technology. Health care systems are passionate about prolonging life and are ignoring the component of caring by disregarding the patient’s rights. There are no existing policies about AD in our country. Thus, this concept needs to be explored at the physician’s level to get their insights and perceptions, as they are the stakeholders at the policy making level.
In Pakistan, no studies have been carried out to find out the perceptions of physicians regarding the need for AD. None of the hospitals in Pakistan have a policy developed for end of life care planning except for the DNR (Do not resuscitate) policy in some tertiary care hospitals. A case based study about how medical decisions are made in our culture was retrieved from the literature and would be discussed. A few theoretical articles were found related to the Pakistani context, but none of them referred to researches or studies undertaken to assess the perceptions of physicians or the need of the society in this regard.
Being a member of this society and a health care professional, the investigator has observed the plight of her patients and her close relatives in intensive care units, where death has been delayed with futile treatments and gadgets like ventilators, Bipaps, etc., instead of making it peaceful. Observations show that financial cost burdens to the families of the sick are substantial, where families have lost most of their savings for the aggressive treatment of their loved ones who either remain in a vegetative state or have encountered death. It would be good if an individual expresses his wishes about the type of treatment he chooses to receive when he becomes incompetent to make decisions. An example of the living will stated on Wikipedia says “If I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued.” When such decisions can be made by individuals in many other countries, why can’t it happen in our country as well? This study would prove to be significant, after evaluating the perceptions of physicians about this concept and would guide to formulate a policy.
The research question was developed on the base of eventual population benefit and the research question that needs to be addressed is “what are the perceptions of Physicians towards advance directives?”
Objective and Organization of the Paper
The main objective of the paper is to write a comprehensive literature review after analysis and synthesis of the recent literature on the perceptions of health care professionals regarding AD. A detailed and organized literature review would be included in sections. Firstly the search strategy would be given, followed by a section on the importance of AD and relating to the Pakistani perspective. Then literature in the studies would be reviewed from different cultures, and then the themes identified in different literature would be discussed with arguments. In addition to that the literature would be appraised in light of strengths and gaps identified.
A comprehensive literature search was done by using databases such as CINAHL, PubMed, and Google scholar. All the articles chosen were by looking at the titles, and then when they seemed relevant, abstracts or introductions were read for final selection. This search strategy retrieved altogether 17 relevant articles which included studies and classic articles as well. Studies pertinent to the western culture and Asian context (Thailand and Japan), multi-cultural were chosen. A case based study on how medical decisions are made in the Pakistani culture has also been selected, but the full text was not retrieved from Google Scholar, so the university librarian helped the investigator retrieve that article through his sources. 4 articles were chosen from the investigator’s collection of articles used for her ethics position paper, which were relevant to the same topic. The search strategy and details are listed in a tabular form in appendix I, which would reveal the number of articles retrieved by using which key words and what filters were used and the rationales for choosing those articles.
Literature Review on the concept of advanced directives
Advanced directives include legal documents such as the living will, power of attorney option and surrogate decision making (Burkhardt & Nathaniel, 2002). A legal document which provides information to the care providers about the patient’s wishes regarding advance treatment options for the future when decision making would not be possible for the incompetent patient (Beauchamp & Childress, 2001). Policies related to AD were developed in the western world after 1990, with the advancements in technology to reduce unnecessary prolongation of life. This occurred immediately after the first right to die case of Nancy Cruzan was brought up in the Supreme court of the United States, and the common law of informed consent was viewed as including the right to refuse treatment. Finally decision was taken after statements were made by her friends that she had expressed that she would never want to live in a vegetative state (Burkie, Mueller, Swetz, hook & Keegan, 2012; Croke, 2005; Johnson, 1996). In response to Nancy Cruzan’s case the Patient Self Determination Act (1991), galvanized health care institutions to ask patients at the time of admission if they had any AD or suggest them for the same (Burkie, Mueller, Swetz, hook & Keegan, 2012; Croke, 2005; Johnson, 1996). According to Emanuel et al. in (Johnson 1996), 93% of the outpatients in the US desired for AD.
According to Khan (2012), in her editorial, advancements in technology have prolonged life, but issues about quality of life and problems imposed by technology on patients, families and communities have surfaced with minimal benefits to the patients. Before the 1970s medical decision making was physician directed following the principles of beneficence and non-maleficence (Burkie, Mueller, Swetz, hook & Keegan, 2012). Then the concept of advanced directives was unveiled which supports the principle of Autonomy, that an individual has the right to decide for oneself (Winzelberg ,2005). According to Winzelberg (2005) improving decision making at the end of life places importance on the principle of patient’s autonomy, where care should be according to the individual’s preferences.
Moazam (2000) refers to medical decision making in the Pakistani culture and advocates that how can patient’s autonomy be given importance where family members even avoid the disclosure of a terminal diagnosis to avoid burdening the patient. In this society, member of the extended family or the physician who is adopted in the family takes the decision for the patients under palliative care (Moazzam, 2000). On the contrary, Akhtar (2011) suggests that initially, the concept of a living will, would not gain acceptance in a family oriented culture like Pakistan, where the patient depends on the physician or the family to make decisions about treatment, but on inquiring every individual would favour a peaceful death, without being burdensome to the family.
In the Asian context a study was conducted in Thailand, about the physician’s attitudes and practices related to advanced end of life care planning for critically ill patients. Self- reported questionnaires were used and the results affirmed that these AD would be useful for the Cardio- pulmonary resuscitation and physicians had admiration for the patient’s wishes. AD and end of life care planning with the patients was limited, and the family or the treating physician makes the decisions (Sittisombut, Maxwell, Love & Sitthi-Amorn, 2009).
Another quantitative study in a Japanese society was conducted of the population regarding the preferences of the use of AD. A self-administered survey questionnaire was sent by mail to the residents of Tokyo by a stratified random sampling. Associations between correlating factors were assessed and showed that AD might be useful in this society if an individual either wishes not to appoint a surrogate or ensures his directives in scenarios of terminal illness, pain relieving and disclosure of information. Other areas that were highlighted in this study is that majority of the participants felt that expression of AD could be done by word through family or physician and not written and that there is no urgent need to set up a legal system for AD ( Akabayashi, Slingsby, & Kai, 2003). In view of the above three studies from the Asian culture, there is awareness about the need for AD, but they prefer alternate arrangements to handle issues of end of life care planning. In these cultures, similar to Pakistan decisions are usually made by the family or the primary physician (Moazam, 2000).
A study was carried out in the four states of the US to assess the knowledge, Attitudes and experiences related to AD among oncology nurses. A survey was done by mailing an instrument KAESAD (Knowledge, Attitude, Experiential Survey on Advance Directives) and then on interpretation, it was found that nurses had knowledge about ADs in general and less knowledge related to the PSDA (Patient Self Determination Act). It was recommended that nurses need to be trained regarding the concept of ADs to counsel patients and their families (Jezewski, Brown, Wu, Meeker, Feng, & Xiaoyan, 2005).
A qualitative research was conducted in Hampshire on proxy perspectives concerning end of life care for people with cancer. This research was done by a telephonic interview of family proxy 3-6 months after the death of the patients from cancer. One of the quality care indicators measured for this study was, decision making and physician communication. Proxies of patients reported that 78-81% of patients had completed one form of their AD and they helped in guiding care, 57% of the patients made a plan with their primary physicians to ensure that their wishes were taken care of (Bakitas et al., 2008). Both the studies from the western culture drew similar results of going by the patient’s wishes for AD.
The themes that were identified in the process of literature review are as follows:
Understanding regarding Palliative care
Palliative care is taking care of patients with conditions that cannot be cured, supporting them in the period of suffering and emphasize on care rather than cure (Khan, 2012). In Pakistan, “shift from cure to care is not taught and is considered a failure” (Khan, 2012). Quality of life becomes a priority when talking about end of life care, and it is reflected as one of the most important aim in palliative care (Van Wijmen, Rurup, Pasman, Kaspers, & Onwuteaka-Philipsen, 2010). Unnecessarily prolonging life would mean pain and misery for the patient and undue expenses for the family. End of life treatments can be futile and fail to improve quality of life and leave the patient miserable and in a vegetative state (Shalev, 2010). The term futile means, “Patients who are irrecoverably dying have reached a point where further treatment provides no physiological benefit” (Khan, 2012). Therefore, physicians should bravely deny giving futile treatments because they can be harmful and inhumane (Kelly, 2005).
The concept of AD is based on the ethical principle of autonomy, which can be understood as an expression of human dignity, and the right to take action according to one’s own values and beliefs (Beauchamp and Childress, 2001). According to a study done in Portugal, the nurses expressed that a legal framework should be provided to AD, because in this way they would be promoting patient’s dignity by avoiding futile treatments ( Pereira, Fradique, Fialho, Cerqueira, Pereira & Sampaio 2011). According to the American Indians, autonomy is not considered as an individual concept, but, here the decision making is done by the family or community (Giger, Davidhizar, & Fordham, 2006).
Discomfort of Health care professionals in Discussing End of Life care
One of the themes identified was the discomfort and incompetence of Health care professionals in discussing end of life care. Opposing this, Sorensen (2011) stated that if physicians would avoid such situations, they would deny the opportunities to formulate proficient and personal ways to deal with such issues. So, they should address these neglected issues and learn new ways of communication and skills by successive encounters (Sorensen, 2011). Reilly et al. in (Johnson, 1996) says that when a patient’s age is over 75 years, patient wishes to discuss AD, and critical illness such as AIDS, metastatic conditions, Alzheimer’s disease become the most powerful reasons to initiate discussion about end of life care.
Who should communicate with patients and families about ADs?
According to Akhtar (2012), the primary physician and a counsellor can be the key people who should communicate about the concept of ADs. According to Oddi and Cassidy (1998) in Jezewski, et al (2005), “Nurses have an important role in providing information and assisting patients with the completion of ADs.” In several articles, the notion that nurses can counsel patients and families regarding ADs was supported. So, after reviewing the articles, this concept about communicating about ADs would be the responsibility of the primary physician and additional counselling can be done by the nurses.
Critical Appraisal and Gaps
A number of studies and theoretical articles have been reviewed and it has been found that in our Pakistani culture, this concept of AD has not been explored at all. There have been studies from the western context, and very few from Asia. Thus, I feel there is a need to address this issue. By doing this study we would be able to explore the perceptions of the health care professionals including physicians and nurses.
In our culture this study would prove to be beneficial for the patient and families, because if there is a policy formulated after this study, the terminally ill patients, or those under palliative care would not have to bear the pain and misery towards the end of their lives and die with dignity. And the family will not have to go through a guilt trip and it would prevent the family from unnecessary medical expenses. It would even help the health care professionals to plan treatment according to the document of the patient, with no doubts about the comprehensiveness of the treatment. It would be the autonomous decision of the patient, which would be respected and would in turn create a relationship of trust between the patient and the treating physician.
After reviewing the literature and having a broader perspective, and knowing that a nurse can play a role in counselling patient’s regarding AD, the investigator’s research question would be, “What are the perceptions of health care professionals towards Advance directives”? At this preliminary stage, it seems that a Qualitative approach would be more appropriate for this study as the researcher would like to achieve comprehensive and reflective insights from the participants of the study. The researcher has thought about conducting interviews using open-ended questions regarding the views of physicians and nurses about AD. This is a tentative strategy; a more confident methodology would be decided as the investigator studies more about the qualitative and quantitative approaches in her research course.
Considering the studies and knowing that there hasn’t been any study pertaining to ADs in our culture, there is a need to do so. If not a policy, awareness would be created regarding this concept in our society. AD have become an indispensable part of health care systems. Endorsements in this literature propose that physicians should discuss end of life decisions with patients when they are decisive and nurses can help counsel patients and families regarding this concept. The concept of AD may although seem blunt initially, but is realistic. Implementation of the policy and practices related to the concept can be evaluated by a study of the perceptions of the health care professionals towards advanced directives. Primarily this issue might not achieve recognition, but gradually with understanding it would be accepted. At least people who are in favour of advanced directives will be able to utilize and benefit from it.