Category: Doctors and Death

Doctors as End-Of-Life Patients

You know the saying “doctors make the worst patients.” Although, when it comes to the end-of-life care, they may be more different than they are difficult. Like most people, doctors want to die in a painless and peaceful way.1 Although doctors want to die in the same manner as most people, do they die any differently than those who are not physicians?

The cultural perspective of this blog post will investigate why doctors seem to die differently than those not in the medical field. A pivotal essay by Ken Murray, a doctor himself, provided the first insight into why doctors typically deny aggressive, and even futile, end-of-life care. He shares that doctors witness their patients go through aggressive and futile measures to stay alive, only to see them suffer further.1 Murray is not the only doctor who has come forward about these intense treatments. Dr. Kendra Fleagle Gorlitsky accounts times when she performed cardiopulmonary resuscitation [CPR] on an elderly woman. She recounted that CPR generally results in broken ribs, which can leave people in more pain at the end of their lives. Dr. Gorlitsky knew the attempt was in vain. This event may have influenced Dr. Gorlitsky to have a Do Not Resuscitate [DNR] at the end of her life.2 A Stanford study exemplified that many doctors concurred with the opinions of Murray and Gorlitsky. The study showed that 88.3% of doctors surveyed in 2013 indicated that they would choose to have a DNR.3 Doctors choose limited measures at the end of their lives because they understand that is not the way to a peaceful end.

On the other hand, there is no proof that doctors have a better end-of-life experience. Although, according to an article in The New York Times, there are no statistics to support the fact that doctors have a better end-of-life experience, there is proof that suggests that doctors are more likely to have advanced directives and living wills. This may be because doctors are typically closer to death than the general population.4 As aforementioned, doctors see the aggressive treatment their patients go through, and advanced directives and living wills may indicate to the proxy decision-maker that the doctor does not want the same treatment. A retrospective study also concurs with this statement. According to the study, doctors are more likely to have completed advanced directives than those who are not doctors.5 Even though doctors are more likely to opt out of aggressive treatment, this retrospective study found that those who are and are not doctors are about as likely to use intensive end-of-life care.5 This study was of those who already died between 2008 and 2010, so more research would need to be done in order to determine if there is a current correlation between being a doctor and having intense end-of-life care.5

Doctors see the aggressive treatment that their patients endure daily. They know that these efforts are in vain and typically end in discomfort and pain. Because of this recognition, doctors are less likely to accept aggressive treatment, and are more likely to have an advance directive and living wills. Doctors are well-aware of the prognosis and their chances of survival. They are also cognizant of the limits to modern technology, and this contributes to the little treatment they seek.1

This is a sample of an advanced directive, or living will, in the state of North Carolina.

http://livingwillforms.org/nc/north-carolina-living-will-advance-directive/

This is a sample DNR in North Carolina, and it outlines the patient’s wishes in terms of extensive end-of-life measures.

https://k-sit.com/12-things-you-wont-miss-out-if-you-attend-free-do-not-resuscitate-form-nc-free-do-not-resuscitate-form-nc/45538/free-north-carolina-do-not-resuscitate-dnr-order-form-pdf/

The rejection of aggressive, end-of-life care options by physicians may not only be rooted in cultural perceptions, but also in the minimal, if any, improvements in quality life or increases in life span after administering these extensive measures (see The Legal and Ethics of Prognosing the Terminally Ill).  The experience afforded to physicians working with patients at the end-of-life offers insight into how patients suffer in the hopes of prolonging life. Various methods of end-of-life care exist as options for terminally-ill patients, or those in critical care. Perhaps one of the most overused resources involve extended stays in the Intensive Care Unit [ICU], which may entail placement of feeding tubes, insertion of catheters, placement on artificial ventilators, and chemotherapy for cancer patients.

This photo displays a typical scene in ICU rooms across the country with an abundance of wires, tubes, and equipment that the patient is often hooked up to.

https://www.statnews.com/2016/09/07/hospital-icu-modernize/

To provide a frame of reference for the usage of these resources, approximately 38.3% of deaths reported in six states across eastern United States since 1993 occurred in a hospital,  22.4% of which occurred following admission into the ICU.6  It is understandable that doctors are more hesitant to offer, and use for themselves, extended ICU support for the critically ill when approximately 1 in 5 Americans die even after being admitted to the ICU. The United States, in particular, has a disproportionately higher number of extended ICU stays when compared to a majority of developed nations. For instance, only 31.5% of medical deaths and 61% of surgical deaths in patients over the age of 85 involved ICU use in the United States, which far surpasses the respective rates 1.9% and the 8.5% in England.7

This figure displays the global variation in ICU beds per 100,000 people in each of these countries. https://ccforum.biomedcentral.com/articles/10.1186/cc11140

The medicalization of dying has popularized the notion of these aggressive, end-of-life care treatments, such as extended ICU use, as viable options to the public.  However, a general consensus against these invasive options, as referenced earlier, seems to be forming amongst physicians, leading the to growing popularity of options such as hospice and palliative care (see The Differences Between Hospice and Palliative Care). The term “medically futile” has become a controversial and highly-debated topic in bioethics. Technically speaking, quantitative, or physiological, futility refers to the situation in which the chance of the treatment producing the desired effect is low or poor, referring to a success rate of less than 1% in some cases.8 One study of 1,900 subjects found that the chances of a poor neurologic outcome during or after the stay, including severe cerebral disability, coma, or persistent vegetative state, was 77%.  Along with this, mechanical ventilation increased the likelihood of a patient exhibiting symptoms of delirium three-fold.  Absent pupil or corneal response after just twenty-four hours in the ICU would increase the likelihood of poor neurological outcome ten-fold, emphasizing quality of life as a significant cost for those weighing their options with regard to sustaining or prolonging life.9

In addition to psychological complications, mechanical ventilation often results in increased inflammation and fluid in the lungs, eventually leading to multi-organ failure, a common cause of death associated with longer stays in the ICU.10 Clearly, the weight of futility has increased in providers’ perceptions of death and logically impacted their decision to pursue invasive options. When considering constraints on resources in hospitals, decreases in the quality of life of the patients, and the limited increases in their lifespans, the decision of most doctors to reject these aggressive measures, that they so often see fail, seems justified. However, when faced with making that decision for someone else’s life, this may not be the case.

The stark difference between the way that doctor’s choose to approach their end-of-life care juxtaposed to what they generally prescribe to their patients raises many questions and ethical concerns. The biggest question being: if doctors do not see this care as holistically the best way to approach a terminal disease, why do they influence others to take this route? In fact, in many scenarios, it is pressure from the healthcare system itself rather than patient interests that direct one’s end of life experience.11 This can be attributed to many different things. For one, the entire enterprise of medicine is focused on the extension of life, and often prioritizes quantity over quality. Furthermore, treatment can be very subjective and thus variable to an individual doctor’s opinion or practice style. Since there are not always set procedures–especially in the case of terminal illnesses–the doctor’s own opinion often reigns supreme.  When identifying why physicians may pressure futile care, “prognostic uncertainty,” “legal pressures,” “personal beliefs,” and “previous experience with that patient” all ranked highly.12

This figure displays reasons for physician-driven futile care.  The interlocking and sometimes overlapping points can make a strenuous decision that much more complex.

https://www.sciencedirect.com/science/article/pii/S088394410500050X

Finally, doctors often prescribe the most aggressive forms of end of life care in order to avoid legal conflicts.12 As doctors work in a field that confronts death often, they may be suspected of not doing “everything they can” to save a life, prompting the family or other healthcare providers to attempt to press charges. For example, in the article How Doctors Die, Ken Murray describes a situation in which his friend Jack had asked not to be placed on life support at the end of his life, but his wishes were ignored. When Murray unplugged the machine, which inevitably caused Jack’s death, one of the nurses attempted to report the instance to local police as a possible homicide.1 The fear of impending legal charges is one that a doctor must constantly consider, contributing to part of the reason they may exclude the most reasonable form of end-of-life care as an option.

This idea in itself raises a moral conflict as a doctor must juggle whether to be aligned with the law or what is in his or her patient’s best interest. In one case presented in Stephanie O’ Neil’s article, Nora Zamichow expresses that she wished doctors had been more transparent when it came to her late husband’s end-of-life care. After reading Ken Murray’s article, she felt dismayed at the fact that she had not been presented “the full range of options”.2

So why don’t doctors give nontreatment as a treatment option, or limit treatment to reasonable treatment rather than “futile care”?  For some doctors it comes largely from the discomfort associated with the subject of death itself. In Western countries, like America, death is a taboo subject, which is portrayed in the ways we refer to death: “passing away,” “didn’t make it,” “at peace,” “eternal rest,” etc. All of these roundabout ways of describing death simultaneously symbolize the American instinct to avoid death. As one doctor puts “I think it’s sometimes easier to give hope then to give reality.”2 This is then only exacerbated by subtle pressure from the family to continue doing “everything” one can to save their loved one. In fact, in a survey explicated in the article written by Palda et al., “family request” was cited as the number one reason for providing futile care.12 Unfortunately, the family’s desire to extend their loved one’s life may be the unintentional cause of their loved one’s extended suffering.

The best way to avoid this dismal pitfall is to improve family-physician communication. In a survey described in the article written by Sibbald et al., there seemed to be a  general consensus that  medical professionals educating the public about “futile care” was necessary in limiting it. In this sense, both doctors and the common person must make an adjustment. Medical professionals need to present all of the the information in regards to a case without fear of legal prosecution, and patients–as well as family members of patients–must be receptive to this reality in order to prevent prolonged suffering associated with futile care.13

By delving into the scientific, cultural, and ethical considerations that doctors must take into account when faced with death, the wide gap between end-of-life options that doctors offer to patients and those they choose for themselves can be better understood. Medical professionals witness the limitations of modern technology and the significant costs associated with aggressive end-of-life options more frequently than most of the general public. Although the chances of survival or recovery of patients choosing these options are low, this sliver of hope is often enough for family members to hang on as they watch their loved ones slip away from them.  Forcing doctors to consider relationships and family dynamics places them in difficult positions when discussing treatment options and further complicates their suggestions. The research discussed above can better inform the modification of current patient-provider interactions to ensure that doctors provide reasonable end-of-life care options to patients, while not prolonging the suffering of both the patients and their loved ones.

 

By: Naomi Glidden, Emily Miller, Rishika Reddy

 

1 Ken Murray, “How Doctors Die,” 30 November 2011, https://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/.

2 Stephanie O’Neill, “Knowing How Doctors Die Can Change End-Of-Life Discussions,” 6 July 2015, https://www.npr.org/sections/health-shots/2015/07/06/413691959/knowing-how-doctors-die-can-change-end-of-life-discussions.

3 Tracie White, “Most physicians would forgo aggressive treatment for themselves at the end of life, study finds,” http://med.stanford.edu/news/all-news/2014/05/most-physicians-would-forgo-aggressive-treatment-for-themselves-.html.

4 Dan Gorenstein, “How Doctors Die: In Coming to Grips With Their Own Mortality, They Are Showing the Way for Others,” The New York Times, November 20, 2013, page F1.

5 Daniel D. Matlock et al., “How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life,” May 16, 2016, https://doi.org/10.1111/jgs.14112, 1061.

6 Angus, DC. “Use of Intensive Care at the End of Life in the United States: An Epidemiologic Study.” Critical Care Medicine (2004): 293-94.

7 Niederman, Michael S., and Jeffrey T. Berger. “The Delivery of Futile Care Is Harmful to Other Patients.” Critical Care Medicine (March 2010). https://oce-ovid-com.libproxy.lib.unc.edu/article/00003246-201010001-00003/HTML.

8 Aghabarary, Maryam, and Nahid Dehghan Nayeri. “Medical Futility and Its Challenges: A Review Study.” Journal of Medical Ethics and History of Medicine, October 20, 2016.

9 Meyer, Nuala J., and Jesse B. Hall. “Bench-to-bedside Review: Brain Dysfunction in Critically Ill Patients – the Intensive Care Unit and beyond.” Critical Care Medicine, July 24, 2006. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1751001/.

10 Johns Hopkins School of Medicine. “Longer Stay in Hospital ICU Has Lasting Impact on Quality of Life.” News release, April 2, 2014. Hopkins Medicine. https://www.hopkinsmedicine.org/news/media/releases/longer_stay_in_hospital_icu_has_lasting_impact_on_quality_of_life.

11 Periyakoil, Vyjeyanthi S., Eric Neri, Ann Fong, and Helena Kraemer. 2014. “Do Unto Others: Doctors Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives.” PLoS ONE 9 (5). https://doi.org/10.1371/journal.pone.0098246.

12 Palda, Valerie A., Kerry W. Bowman, Richard F. Mclean, and Martin G. Chapman. 2005. “‘Futile’ Care: Do We Provide It? Why? A Semistructured, Canada-Wide Survey of Intensive Care Unit Doctors and Nurses.” Journal of Critical Care 20 (3): 207–13. https://doi.org/10.1016/j.jcrc.2005.05.006.

13 Sibbald, Robert, James Downar, and Laura Hawryluck. 2007. “Perceptions of ‘Futile Care’ among Caregivers in Intensive Care Units.” CMAJ, November, 1201–8. https://doi.org/https://doi.org/10.1503/cmaj.070144.

 

Doctors and Death: The Effect of Patient Death on Physicians

Death is a universal concept, however there are a variety of emotional and professional reactions to the death of a patient. In order to understand how doctors in the United States confront the death of their patients and improve medical practices, it is important to discern how other countries around the world deal with the death of their patients. However, it is equally as important to identify how traumatic circumstances may affect the emotional complex of physicians. Every doctor works in a different environment and encounters patient death in a variety of ways, whether it be after a prolonged relationship or a momentary consultation, but the effect of death is felt by all. By identifying different coping strategies that doctors use to appropriately grieve and remember their patients, it can improve their medical practice moving forwards[i].

Throughout their careers, physicians are subject to a variety of situations that can result in different reactions by the body. Stress is a physical response caused by our body in reaction to an external stimuli. These external stimuli, or stressors, vary in the ways that they can affect the human body. In most cases, the body produces hormones, such as cortisol, in response to these stimuli which then results in stress. Indeed, life is full of stressors ranging from minor situations to high-impact instances that can change a life. These stressors are present in an excess amount of situations that doctors, nurses and hospital staff members deal with. Thus, doctors are constantly dealing with stress. The symptoms of stress can affect our body in numerous ways and in many different areas, as well. According to Mayo Clinic, the effects of stress can range from differences in your body, mood and behavior. Some examples of physical changes include headaches, muscle pain/tension, fatigue and insomnia. Mood changes that potentially result from stress are anxiety, restlessness, anger or depression. Finally, changes to your behavior include under or overeating, drug or alcohol misuse, and social withdrawal[ii].The combination of these   effects often lead to the deterioration of an individual if they are not properly treated.

Portrayed here is the anatomy of the brain including the Cerebral cortex, the Amygdala and the Hypothalamus. The amygdala is partially responsible in inducing symptoms of stress and stress-related disorders, as it is one of the regions that regulates emotions and fears.[iii]

 

The determination of the emotional composition of a physician after the death of a patient is partially reliant on the manner by which a patient receives care as a precursor to the time of death, as well as, the timeline in which a patient is notified of a terminal diagnosis. Often ingrained in the blurred line between personal and professional relations of the physician, it is apparent that the ethicality of treatment may deviate from the expected protocol of professionality as an emotional response to grief or end of life care for a patient.

To serve as a look into the variance of the emotional response of grief and continued medical treatment to patients after another patient’s death, it is clear that the judgement of the physician may be impaired by unidentified or suppressed feelings of grief with particular emphasis on inattentiveness, impatience, and irritability following the death of a patient. The continued response of grieving physicians can further be enhanced by stress or burnout, which could trigger a response of more aggressive treatment for other terminal patients under their care, such as suggesting a risky surgery, a more aggressive form of chemotherapy for cancer patients when palliative care would have been a more effective means of “treatment” [iv]. In comparison, the equally unethical response of a physician to impending or actual patient death is the altering of communication at the end of life. For some physicians, this may present as withdrawal or avoidance from either the patient, themselves, or the families of the patients. To cope with the persistent exposure to death, physicians are under the belief that their “professional detachment” will more effectively diminish the feelings of grief they may be feeling, but in actuality, it establishes an impenetrable barrier between the physician and patient or family[v]. As experienced by a patient, this presents as fewer bedside visits and minimal discussion about treatment or the expected timeline of events surrounding death. Often times this form of social isolation constructs a stereotypical image of physicians being “cold” or “uncaring,” creating a general mistrust between the patient and physician potentially leading to improper treatment. Under the conditions of grief, stress, or burnout, physician’s judgement will be compromised in regards to making beneficial medical decisions for the patients, known as iatrogenic suffering[vi].

In order to understand how doctors respond to the death of their patient, it is important to examine different surveys and studies conducted around the world. Prior to investigating the different studies, it is essential to comprehend the concept of palliative care because it is a central point in many of the studies conducted surrounding the relationship between doctors and terminally ill patients. Palliative care is a type of specialized medical care that aids people living with a terminal illness and alleviates any distress or pain they feel in order to improve their quality of life. Palliative care differs from hospice care because it can begin directly following the diagnosis whereas hospice care begins after treatment has commenced[vii].

While doctors and caregivers, alike, face many challenges and difficulties, none are as tumultuous as the death of a patient. This obstacle can result in a large amount of stress, potentially causing psychological disorders such as PTSD, compassion fatigue, burnout, moral distress and diseases of the mind. For instance, “Such stress has been linked to professional burnout and may put doctors at risk of psychiatric disorders”[viii].This type of burden can be potentially career ruining for experienced doctors and novices alike. Not only can this stress cause a doctor to lose their job due to poor performance in response to emotional distress, but it can also result in serious disorders of the brain. For example, “stress plays an extremely important role in the onset, the maintenance, and the aggravation of psychopathological disorders”[ix]. Often talked about behind closed doors, psychopathological disorders can be detrimental to almost anybody, in particular doctors who are given the responsibility of their patients’ lives. An example of a dangerous condition is compassion fatigue which is “described as diminished emotional energy needed to care for patients and has symptoms similar to primary PTSD, i.e. hyperarousal, avoidance and re-experiencing”[x].The stress, sadness, and grief associated with the loss of a patient, or care of a terminal patient, makes it difficult for these people to perform their jobs to the best of their ability,which could possibly violate the doctor’s personal performance.

Depicted here is a doctor watching as their patient begins to pass. Patient death is a traumatic issue that results in many ethical and physical dilemmas for physicians and nurses alike[xi].

Some people may believe that traumatic death only affects a small amount of doctors, which may be true, but contradictory evidence exists as presented below. These emotions are commonly present in casesas many doctors find traumatic death to be hard to deal with. Statistics show that a large amount of physicians feel this way, “A total of 86.4% (95/110) of respondents reported feeling distressed as a result of a patient death, 51.8% (57/110) at least moderately and 4.5% (5/110) to an extreme level”[xii]. This isn’t simply a phenomena that some doctors deal with, but almost all doctors deal with the death of their patient as a stressor. Even more concerning is the presence of symptoms of stress, PTSD and other psychological disorders. For example, “ Of the total sample, 42.7% (47/110) had repeated disturbing memories, 19.1% (21/110) at least moderately and 2.7% (3/110) to an extreme extent…” and “when respondents were asked if they felt angry or described having angry outbursts, 18.2% (20/110) identified that they had… Some respondents (28.2%; 31/110) had experienced difficulty concentrating following a patient death”[xiii]. These are the very symptoms of stress and PTSD being displayed by our physicians after dealing with traumatic death. It is imperative that people begin to understand the struggles that our caregivers go through and find the resources to help them deal with these unspoken issues.

Regarding the ethical treatment of effectively implementing the timeline in which to inform a terminal patient of their critical condition can be subject to ability of a health professional to maintain their composure. In particular, a study conducted in Sweden suggests that when physician has to break bad news to a terminal patient, specifically one with cancer, they face the potentiality of losing control of their confidence, professionalism, or the trust of their patient[xiv]. It is important to distinguish that physicians tend to face more of a struggle with “losing control” when treatment options are not as viable as palliative care. It is understood that the fear of losing control when informing patients of a terminal diagnosis can impede the conversational component as it creates a misrepresentation of the patient’s current of state of health. In this way, the lack or misrepresentation of information by a physician ethically violates the rights of a patient for knowing all of their treatment options, but also prevents the ability of the patient to make arrangements preceding or surrounding their death. Referencing the withdrawal often experienced by doctors as a coping mechanism for grieving the loss of a patient, it is understood that many physicians adhere to a policy of not sharing the diagnosis of a patient with a patient. Not only this, but many physicians take on the approach of only discussing the diagnosis and predicted timeline before death if the patient or their family approaches the subject[xv].

Utilizing a cultural approach to understand the emotional complexity of doctors response to patient death, a primitive study describes the relationship between doctors in palliative care services and end-of-life outcomes in Taiwan. As defined within the study, hospice is a very taboo among many Taiwanese because of the association with death and therefore many physicians spend less time with the patients. This results in a lower doctor-patient interaction time and indicates that the doctors are less emotionally attached to the patient. The results of the study concluded that patients who used palliative care services improved the quality of their end-of-life and suggested that it be implemented more widespread throughout Taiwan. The doctors illustrated that they wanted to prevent any additional harm to the patients and since there was limited exposure to the patients, the doctors were not severely impacted by the death of a patient[xvi].

The second study explores how doctors perspective palliative care with patients with metastatic cancer, which is cancer that has spread to multiple locations. This study was conducted in Turkey and all the doctors that were surveyed were non-oncologist physicians, meaning that their specialty was not cancer. Traditional Turkish families support the use of palliative care with a family member in pain, however physicians only recommend palliative care for patients with cancer. Turkey has a pain management shortage, which means that drugs such as morphine and opioids are less available for widespread use. This impacts the doctors view on death in Turkey because many doctors have to see patients suffer with higher levels of pain relative to other patients with the same condition around the world. This results in more burnout for doctors working with terminally ill patients and higher rates of resistance to the use of palliative care services and hospice care[xvii].

The final study is a survey carried out in the UK about doctor support following the death of a patient and how the death impacted their memory of the patient. This study exemplifies a westernized vision of how physicians interact with patients and found that nine out of ten doctors handle death well and do not have a significant and emotional response to the death of the patient in a way that would disrupt their medical practice. The study also found that patients that died in a traumatic way were more memorable for doctors. The survey discussed that the best way to address the emotional distress that some doctors feel is to provide them with a supportive environment that includes counselling services specializes in patient death[xviii].

Each one of these three studies displayed how there are different cultures and environments for doctors around the world that impact their response to patient death. A common thread throughout the studies was that doctors need support in the instance that the death of a patient impacts them to the point where they are unable to practice good medicine. In countries such as Taiwan and the UK, the doctor has an easier time separating from the patient because resources are readily available in these places. Considering Turkey has less resources to medicine that makes the patient more comfortable, the doctor suffer as a result because they are not able to treat their patient to their best ability. This expresses a universal idea of “primum non nocere” or “first, do no harm” that doctors around the world prescribe to[xix]. When doctors are in a position to make their patient more comfortable if they are inevitably going to die, they will be less distressed with the outcome of death. Inversely, when patients die in a way that is traumatic and doctors are able to provide little to no relief, that causes more distress for the doctor as well. There is also work to destigmatize palliative care in the Eastern world because is it often compared to the negative aspects of death and if doctors can improve the the experience of death and ensure the comfort of the patient, they will feel as if they have done everything they could do as professionals and as doctors.

Not only is the need for support shared by doctors around the world, but stress is also a common emotion that many doctors and nurses experience. A common question posed by many anthropologists are whether certain experiences happen to be universal across all cultures. Stress and its related symptoms are the opitimty of a shared human experience. In a study done on female nurses in Hong Kong, the results were unanimous in pointing towards the prevalence of stress and other mental disorders in hospital settings. For example, “Our study revealed a prevalence of depression, anxiety and stress at 35.8%, 37.3% and 41.1% respectively among nurses in Hong Kong. The proportion of nurses suffering from depression, anxiety and symptoms of stress is alarming.”[xx]. These results corroborate with the idea that stress is a universal human experience shared by people of all occupations, particularly those with increased stressors like doctors and nurses.

Accounting for the discrepancies among patient care and medical performance by a physician during the grieving process or as a response to stress, the ethicality of interactions with patients and families can be compromised. Ethics of care would be one of the most violated principals considering the role of a physician is to accurately advise the patient and their family, however, with the emotional state of the doctor being compromised it may lead in inappropriate treatment plans. When physicians create a social barrier from the patients they treat and their families it continually disrupts the right to ethics of care because of a potential for not being informed of all choices as well as a creating a general mistrust of the relationship. Not only this, but nonmaleficence can be seriously questioned regarding the impulsivity of a physician in response to emotional distress exemplified by the choice of a physician to select a more aggressive form of treatment instead of palliative care would be more ideal for the situation of the patient. Considering the evasion of ethics for informing a patient of their terminal diagnosis, it greatly compromises the ethical principle of autonomy.

Taking into account the evasion of ethics for informing a patient of their terminal diagnosis, it greatly compromises the ethical principle of autonomy. Particularly, the lack of open communication between the patients and physicians presents an issue for the autonomy of a patient the patient lacks all of the information they would need to make an informed decision about medical care. Not only this, but the ethical principle of justice is violated by the physician when the communication between the physician, patient, and family is severed as the information that is owed to the patient is not truly given. While this may not be a conscious decision by the physician to create these ethical dilemmas, it isolates all parties involved and contributes to the negative effect patient death has on the performance of physicians.

While it is understandable that all humans experience emotions and grief in a variety of ways, as a society we hold doctors to the highest of standards. When a doctor is unable to perform their work in a way that is received well by patients and families, alike, not only does this affect the treatment and care of their patients, but also alters their mental state. As a potential solution to aid in the ability of doctors to cope with the death of their patients, it has been suggested to implement a course during their medical school training on how to cope with death during their careers[xxi]. Even though this will not completely resolve the issues that arise for physicians from patient death, it can minimize the initial sense of shock as well as providing effective coping mechanism for grief. With the understanding that stress and grief are universal and interrelated processes, the effects patient death has on physicians, both domestically and globally, demonstrates the complexity of human nature and how we must further strive to support the rights of patients as well as assisting doctors through the process of grief.

 

 

Lillian Geis

Wes Yanowitch

Alexis Roberts

 

Word Count: 2931

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The Legal and Ethics of Prognosing the Terminally Ill

Diagnosing a patient with a terminal illness affects critical decisions of the patient and their family.  Doors open to options such as death with dignity, resulting from a doctors prognosis.  Vague definitions of “terminal” with a lack of scientific reasoning behind the prognosis surfaces ethical dilemmas in the context of the law.  This article explores the intersection of law and ethics of prognosing the terminally ill, and the aftermath of the prognosis.

The practice of providing a patient’s prognosis has been revisited many times over the last century.  A hundred years ago, the phrase, “‘the doctor said’ was pronounced with almost religious conviction[1].”  Individual autonomy was almost non-existent due to the pedestal medicine was put on.  It was a classic case of paternalism, the interference an individual, against their will, and motivated by a claim that the person interfered with will be better off[2].  During a time where most doctors were white Protestant males, “they did what they thought was best, but what they thought did not include the traditions, morals and viewpoints of everyone else[3].”

Jerry Canterbury with a photograph of J. Edgar Hoover. Mr. Canterbury worked at the F.B.I. as a clerk in the late 1950s.

It wasn’t until a 1972 court case that a practice of patient’s rights to information and individual autonomy was solidified in law.  Canterbury v. Spence (1972) was a pivotal federal appeals court decision in medical ethics.  Jerry Canterbury had undergone a spinal surgery that went poorly, resulting in partial paralyzation of his lower extremities.  He sued his doctor, William T. Spence, for failing to adequately warn him of the risks of his surgery.  While Dr. Spence ultimately walked away from the event relatively unscathed, the court case became the foundation of the doctrine of informed consent.

The practice of informed consent began as a movement away from paternalism, towards individual autonomy. Cultural values and morals were taken into account, and no one was a better judge to those values than the individual themselves.  Doctors were no longer seen as “God,” but as a resource for patients to make decisions.  However, consent, and informed consent are different.  Informed consent is the practice where people the have freedom to decide what should or should not happen to his or her body and to gather information of all risks before undergoing medical treatment[4].  By being knowledgeable about risks, anticipated results, and alternatives, individuals are able to make the decision that they believe will be in their best interest.  Their consent would then be considered morally ethical to proceed with, whether or not it aligns with the doctors.

Today, when an individual gets diagnosed with a terminal illness, such as cancer, one of the first questions posed by the patient is often “how long do I have to live?”  Based off the ethics of informed consent, doctors are then morally obligated to give a quantified prognosis because it is an anticipated result of non-treatment.  Patients use this information as the backbone of how they proceed in the coming months, arguably making the most critical decisions of their lives.  In a study done by Harvey Chochinov, refusal to acknowledge a prognosis increases depression by nearly three times[5].  This begs the question whether providing this, likely incorrect, information to patients negatively affects the quality of the remaining life.

“Terminally ill” is defined extremely vaguely around the world. A UK based support organization for the terminally ill defines a terminal illness as “a disease that can’t be cured and is likely to lead to someone’s death[6].” However, the US legal definition gives an expected time frame of life expectancy to not go beyond 24 months[7]” One study in Korea of terminal cancer patients found that once the cancer was diagnosed as terminal, the average survival time was 69 days[8]. A large difference from the US legal definition of up to 2 years.  These vague definitions and lack of diagnosing criteria make it hard to create and follow existing laws with the term terminally ill.

A quantified prognosis of the terminally ill itself is not morally unethical.  It provides another layer of information for patients to understand and grasp the severity of their illness, thus making more informed decisions.  However, ethicality comes into question with the accuracy of these diagnoses.  According to Mayo Clinic Proceedings in November 2005, only 20% of predictions were accurate[9].  Doctors are unintentionally lying to their patients 80% of the time.  Doctors are trying, to the best of their ability, further inform their patients about their terminal illnesses, but medical technology has not advanced to that caliber yet.  With this misinformation, patients aren’t able to give informed consent, nor are they able to maintain bodily autonomy.  In the process of trying to do good, doctors end up doing more harm than good.  This violates Immanuel Kant’s Deontology theory.  Deontology suggests choices are morally required, forbidden, or permitted based on the norms of a society[10].  In contemporary society, lying is deemed as morally unjustified, and thus, giving patients incorrect terminally illness prognoses is unjustified, even though the lie is unintentional.  Therefore, it is unethical to continue to let doctors continue to make quantified life expectancy prognosis.

The harm here is more than just a morally correct or incorrect.  The harm here results in physical pain for the patient and families.  According to a prospective cohort study by Western Journal of Medicine, 65% of inaccurate life expectancy prognoses of the terminally ill were overestimates[11].  While optimism during the hardest part of one’s life does add to the quality of life, critical decisions like late admission to hospice care, or influencing patients to make counterproductive late-life decisions result in harm and regret.  The patient’s own conceptions of the future are flawed because of an inaccurate prognosis.  It is difficult to say whether or not an inaccurate prognosis inherently leads to worse off end of life decisions, but it definitely alters what these decisions are.  Patients are ultimately no longer making decisions that are in their best interest because of this misinformation, thus is unethical.

While there currently is no law forcing doctors to quantify a life expectancy prognosis, informed consent, which is stated in law, is the norm among the medical community, thus doctors are obligated to provide that information as accurately as possible to patients.  Everyone responds and progresses through illness differently, and there is medical technology that can accurately predict an individual’s trajectory accurately.  Until technology has progressed to a point where these predictions can be made with more accuracy, it seems unethical to continue incorrectly prognosing patients.

The practice of informed consent varies throughout the world based on prevalent cultural values. In the United States, informed consent is the leading medical practice as independence and autonomy are highly valued however, these values are not predominant world-wide. A study of terminally ill and hospice patients in Taiwan revealed that 82% of papers for medical treatment orders were signed not by the patient themselves but by family members. Researchers suggested that “this phenomenon probably reflects values in oriental cultures, in which family is the smallest unit of identity and decision-making. Therefore, end-of-life care for one member cannot be decided outside this fundamental social unit[12].” As in the United States, patients in many of these asian countries have the right to pass decision making authority to the next of kin in hopes that their loved ones will make decisions to protect their welfare.

Toward the end of a terminally ill patients’ life, quality of life significantly decreases. One study found that terminally ill patients take more opioids closer to death. Four weeks before death 42% were taking 49 mg/day while within the last 48 hours 87% were taking an increased average dose of 139 mg/day. Opioids have a known side effect of causing drowsiness and grogginess. This is also shown in the same study where the percentage of awake, drowsy, and comatose state patients were tracked and monitored. When in the last week before death, 56% where considered awake while 44% where considered drowsy. The percentage of those deemed awake decreased to 26% 24 hours before death and down to just 8% in the last 6 hours of death. Comatose patients increased to 12 percent with in the last 24 hours and increased again to 50 with the last 6 hours before death. Patients also experience death rattle, described as the sounds heard at the bedside due to fluid in the lungs, RMM, and cyanosis, the coldness in the extremities of the limbs. These struggles that both the patient and the patients families lead to some to advocate for other options[13].

A great fear for many people is the possibility of losing autonomy before death especially after receiving a terminal prognosis. Rights belonging to those who are terminally ill or nearing the end of life greatly vary among cultures worldwide. Although many individuals believe that a patient with a terminal prognosis, who will likely endure heightened suffering, should be allowed to seek means to hasten death, laws and cultural norms are not reflective of these ideals. The two ways to hasten death that are hotly contested throughout current world cultures are ending life through means of physician assisted suicide (PAS) or through euthanasia. Nations permitting either legal PAS or euthanasia, whether active or passive, are the global minority followed by the even smaller minority of countries accepting both means of death. Passive euthanasia refers to instances in which the patient or appointed health care power of attorney, purposefully refuses potentially life sustaining therapies such as an artificial feeding tube or respirator[14]. Conversely, active euthanasia describes instances in which a physician, upon explicit request, administers medication that will cause the patient’s death.  

In the Netherlands, a study noted the types of drugs used in various euthanasia and assisted suicide cases noting neuromuscular relaxants, potassium chloride, barbiturate, and opioids as the main drugs. In some of the cases different drug combinations were used but the types were not classified. In 95% of the Euthanasia cases either a Physician or Nurse administered the medication while in PAS cases 75% of patients administered their own lethal medication. In 69% of euthanasia cases neuromuscular relaxants were administered while in 71% PAS cases Barbiturate was administered[16].

Active euthanasia is uniformly illegal, in the United States however citizens in all 50 states are legally allowed to refuse life-sustaining therapies. On the other hand, the United States does not have one cohesive national law regarding PAS, instead individual states pass laws reflecting their local attitudes towards the issue. Of America’s 50 states, there are “nearly forty states which have an unequivocal statutory ban on physician assisted suicide and six states explicitly declare that they do not condone or authorize the practice in their respective health care laws[17].” This leaves only 6 states with mandated laws, including Colorado, Hawaii, Oregon, Vermont, Washington, and the District of Columbia, and 2 others, Montana and California, with court rulings[18]. The mandated laws of these 6 states model Oregon’s Death with Dignity Act (ODWDA) which allows Oregon residents, who meet certain criteria, to voluntarily end their lives by self-administering medication prescribed by a physician[19]. This practice reflects the common American ideal of striving to be unequivocally free and in control one’s autonomy even in the last moments of life.

The prospect of euthanasia or PAS being legal is becoming increasingly popular in many European countries. Belgium, Luxembourg, and the Netherlands are a few of the handful of countries in the world that legally permit active euthanasia[20]. In these countries, a person must be in a sustained state of unbearable pain or suffering that cannot be alleviated before a request for euthanasia would be considered[21]. In the Netherlands, the right to request euthanasia is outstretched to those who are just twelve years of age as long as the patient is deemed to have an adequate understanding and his or her parents agree[22].  Oppositely, the prevailing legal norm among European countries is to ban all forms of active euthanasia and PAS. Similar to the Death with Dignity Acts in the United States, Lord Falconer’s Assisted Dying Bill was brought to England and Wale’s House of Lords in 2014[23]. This bill wanted to allow patients with less than 6 months to live the right to end their lives with assistance of a physician. The bill stipulated that doctors must provide explicit information about all other available care options and must not coerce patients into taking life ending prescriptions[24]. This bill was ultimately shot down and both passive euthanasia and PAS are still illegal in the United Kingdom.

Citizens of the United Kingdom showing their support campaigning for Dignity in Death. https://www.dignityindying.org.uk/blog-post/bma-vote-assisted-dying-position/

Legal active euthanasia raises many concerns as to the ethical soundness of the practice. Citizens must be assured that they will not be needlessly killed if they are unfortunately diagnosed with a terminal illness. A case study in Belgium sought to study the official reported use of euthanasia in the years before its legality (1998), the year it was approved (2001), and the years following its enactment (2007). Researchers found an initial decrease in use of euthanasia in the year that it was legalized compared to years prior. In 1998 the total deaths caused by life-ending drugs made up 4.4% of total deaths in the study compared to 1.8%  in 2001. The subsequent years revealed an increase in use (3.8%) however it reached an equilibrium near that of the use of euthanasia before legalization[25]. The conclusions of this study show the use of euthanasia is not superfluous and can potentially decrease when put into law.

Similar to the popular view of many European countries, Muslim countries often deem euthanasia and PAS illegal on the grounds that either treatment would likely cause harm to the patient. Islamic law states that terminally ill patients should be treated so that as much injury or harm as possible should be avoided. Unlike in many Western cultures where the right to refuse life sustaining treatments is seen to be inherent, this sort of treatment must only be administered when it has no potential to cause harm nor delay the inevitable death of a patient. “Islamic law therefore does not allow the withholding or withdrawal of basic nutrition because this would result in death by starvation, which is a crime according to Islamic law and contrary to both the fundamental importance of the sanctity of life and the duty to provide nutrition to a fellow Muslim[26].” As with all cultures, there is great variety in the views held by different circles in various communities. A study of a hospital in Iran, a mainly Shia Muslim country, revealed that doctors believed they should employ any necessary medical treatment to sustain a life including artificial hydration or nutrition. Similarly, the Saudi Council for Health Specialties in Saudi Arabia, where Sunni Muslims make up the country’s majority, endorsed providing intravenous fluids and nutrition and stated that neither treatment should be withheld from a patient in need[27].

When someone diagnosed with a terminal illness, medical aid in dying (AID) legally becomes an option a patient can pursue in several states and countries.  This raises an ethical issue because these prognoses are so frequently incorrect.  The moral justification for AID is that it doesn’t inflict more harm, and it gives patients a way to leave their legacy on their own terms, giving the patient more autonomy.  However, the mis prognoses complicates that justification.  If the prognosis is incorrect, as it frequently is, allowing people AID is doing more harm than good.  The justification is no longer valid, and thus, it is hard to say whether or not any prescription of AID is legal.

Researched and written by Ashley Rager, Luke Workley, Qian Yi Pang

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