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Improving End-of-Life Care in Healthcare Administration


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PADM 453 Course …

PADM 453 Course
Roosevelt University
Fall 2010
MPA Program

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  • 1. Elizabeth Weber Final Paper PADM 453 Downey Introduction Death and dying is one of the most controversial topics in medicine. From how to determine the legal definition for death, to respecting the end-of-life wishes for patients who come from various religious and cultural backgrounds, opinions on how to deal with the death differ vastly for doctors and healthcare administrators. While there is no “one way” or “right way” to handle death and working with terminally-ill patients, how can doctors, social workers, nurses, and healthcare administrators work together to handle death and dying in today‟s hospitals and healthcare facilities? Defining death remains one of the most controversial topics in today‟s medicine. From deciding what moment death occurs, to separating dying from the actual moment of death, many people still do not agree with modern definitions of death. Whether it‟s arguing brain death or cardiac death, there are dissenters to every side of the issue. Since the definition of death differs in various cultures, it continues to make the issue more complicated. Along with defining death, life support and the decision to forgo it has had a long history of controversy and debate. Just a few decades ago, allowing family to choose opt for their terminally-ill loved ones that were in vegetative states to be taken off of life support put many physicians and healthcare providers in a sticky situation. Would that put them at risk for directly being involved with the patient‟s death and at what point does continuing treatment that is otherwise futile become an issue of not allowing a patient to die with dignity? Also, who can
  • 2. make these types of autonomous decisions for patients who can no longer give informed consent and what other legal issues arise from forgoing life support? With all the modern advances in today‟s world of medicine, individualizing the needs of terminally-ill patient still remains the most important approach to end-of-life care in the Western world (Costello 594). End-of-life issues are not easy to discuss, but open communication and dialogue are the first steps to understanding patient needs and final wishes. When doctors and healthcare administrators openly communicate with terminally-ill patients and their families, it can make all the difference between what is considered a “good” death and what is considered a “bad” death. Patients and their families insist on healthcare providers not only minimizing pain symptoms and fulfilling final wishes, but also being thorough in their explanation of treatment and timetables, as well as being accessible and reliable to work with. It is also important for doctors and healthcare administrators to prepare and involve all staff for hospice care, as every person involved plays an important role in helping serve each individual patient‟s final wishes. Nurses and social workers, who often go overlooked, play a vital role in the well-being of the patient. Their involvement, and most importantly, their input is something that doctors and healthcare providers need to consider when taking care of terminallyill patients. Fulfilling end-of-life wishes can sometimes be difficult for doctors and healthcare administrators dealing with patients from religious and cultural backgrounds that differ from their own. As mentioned earlier, many cultures disagree with our modern definition of how to declare a person legally dead. Some religions and cultures opt out of certain types of treatment that do not fit in with their beliefs. In some cultures, it is even considered a bad omen to discuss end-of-life topics with patients and their families. For many doctors and healthcare
  • 3. administrators, allowing these patients autonomy and their right to choose or refuse treatment options can be a lot trickier to fulfill. This paper will look to examine all of the above issues and how it relates to patient‟s autonomy, their ability to give informed consent, when someone else must give informed consent, and how healthcare providers can do their best to prevent further prolonged pain for their patients who are dying. It will also look at how it can be difficult for healthcare providers and administrators to fulfill the wishes of terminally-ill patients, but what measures can be taken to try and ensure quality life for those patient populations at their end-of-life point. Discussing death and dying is not an issue or popular topic to discuss, but the more we as a culture avoid it, the more we deny ourselves and our loved ones the ability to have a quality experience near the end of our life. Background to Death/Dying in Medicine In 1970, the Institute of Society, Ethics, and Science, which later became the Hastings Center, were looking for a concrete way of defining death. A debate arose between several members in the medical ethics field as to whether death was a process or one singular event that occurred. They also debated whether death occurred at the moment of cardiac failure. What they managed to agree upon was that death itself was a single event, but that dying was an ongoing process up until the moment of death (Veatch 16). Along with defining death and dying, the Hastings Center also had to discuss life support and whether forgoing it was possible. Around the same time, a case involving a young woman named Karen Quinlan, who was on life support and had no hope of leaving her vegetative state, was shaping how the modern definition of death would be defined. Her parents fought toothand-nail to have her removed from life support so she could die peacefully and quickly.
  • 4. At the time, patients who could establish informed consent were allowed to refuse certain medical treatments, but life support was not considered one of them. Not only was this case a question of autonomy, particularly that of family making decisions for a relative who no longer could, but it begged to differ whether doctors would be put on the spot for assisting a patient to die. It also questioned if continuing futile treatment was unethical. Many aruged if there was difference between actively killing a patient and letting a patient die. Later cases, such as the Terry Schiavo case, had medical ethicists questioning which next of kin gets to decide autonomy for a patient who no longer can give informed consent, what constitutes a truly vegetative state, and if outside influences corrupted decision-making on the part of the family. In 21st century medicine, refusing medical treatment and intervention is permitted at the hands of competent patients and surrogates if they believe the harm is just as great or greater than the benefit, which is also known as the proportionality criterion. In the case of the Karen Quinlan and her parents, it was determined that surrogates can make decisions for patients as long as these decisions are made in respect to the patient‟s wishes, which were expressed when the patient was cognitive (Veatch 18). According to Robert M. Veatch, death was once defined as either the end of circulatory function from cardiac death or the end of brain functions that are irreversible. Today, death, by legal definition, occurs when the entire brain ceases to function. Still, even in today‟s society, this definition does not sit well with everyone. While some ethicists refuse to remain content with using the brain‟s death as a definitive way to declare a patient dead, some cultures and religious groups refuse to accept either brain or cardiac deaths as the absolute definition. Veatch believes it is reasonable to allow people to choose their own definitions when deciding on how to
  • 5. define death (17-18). Defining death in different religions and cultures will be discussed in further detail later in this paper. Improving End-of-Life Care Although it has not been widely studied, the consensus of defining a “good” death tends to lean towards healthcare that is personalized and individualized in regards to a patient‟s needs. The idea of a “good” death revolves around imagining death as something that should be peaceful, dignified, and no prolonging of pain. In contrast, defining a “bad” death involves prolonging pain and causing trauma and grief to both the patient and his or her family (Costello 595). These definitions might seem straightforward to some people, but healthcare providers will need to dig deeper in order to truly understand a patient‟s end-of-life needs. According to the Institute of Medicine Committee on End-of-Life Care, quality death and dying is defined as “a death free from avoidable distress and suffering for patients, families and their caregivers; in general accord with the patients‟ and families‟ wishes; and reasonably consistent clinical, cultural, and ethical standards.” It is noteworthy to mention that the definition of quality of life at a patient‟s end-of-life differs from the definition of a quality death. Quality of life at a patient‟s end life emphasizes giving that patient a satisfactory experience while coping with terminal illness (Patrick et al. 410). Some regard end-of-life care in hospitals as less than stellar due to what is perceived as a lack of compassion and consideration for the patients and their final wishes on the part of medical and administrative staff (Cohen et al. 702). Case studies conducted in Missoula, Montana and Seattle, Washington demonstrated that terminally-ill patients and their family desire continuity when dealing with the process of dying. This continuity consists of strong and open communication between the care provider, the patient, and his or her family; minimizing the patient‟s pain symptoms; and out-patient, at-home
  • 6. care. Patients and family members also desired accessibility from their healthcare providers, including having a medical staff member, who had a strong relationship with the patient, and was available at nights or on the weekend (Patrick et al. 411). The first stage in end-of-life healthcare is open dialogue between healthcare providers and their patients. A report by the Agency for Healthcare Research and Quality stated that quality of end-of-life care begins with the physician discussing treatment options with the patient and his or her family, including length of treatment, invasiveness of treatment, overall prognosis, and quality of life during the duration of the treatment. The Institute of Medicine reported that quality end-of-life care can only occur when a patient‟s wishes can be fulfilled properly. In order to ensure this, healthcare providers must be openly communicative during the earlier stages, as it becomes harder to determine patient wishes as their health deteriorates (Patrick et al. 414). Overseas, some European governments are creating programs to specifically address endof-life healthcare. In 2008, the UK‟s Department of Health created a project called the End of Life Care Strategy, which sought to set markers for measuring end-of-life care. The Department of Health used the Liverpool Care Pathway (LCP), an integrated way of providing quality endof-life care to patients in their final days or even final hours. The LCP opts to move terminallyill patients from hospice care to other clinical areas, if necessary. The LCP is recognized by the Department of Health as the best model in end-of-life care (Pugh, McEvoy and Blekinsopp 544545). Training and Preparing Medical Staff for End-of-Life Care Despite its commonality in the field of medicine, death still remains to be an emotionally distressing topic for healthcare staff members. It is a common misconception that all medical
  • 7. staff is prepared and well-equipped to handle death, but the reality of the situation is quite different. Medical staffs receive very little teaching during their university studies and on-thejob training in regards to how to handle death (McIlwaine et al. 151). Understanding death and its emotional, psychological, and sociological complexities is important for healthcare and medical staff members, ranging from doctors and nurses, to chaplains, social workers, and counselors. Even when anticipating death, healthcare providers who have limited training and exposure to death can take the process very personally, even feeling overwhelmed and overcome with emotion. Exposing staff members to death and how to deal with it is important to start very early during either their on-the-job training or during their university studies. Social workers and counselors do have some early training in dealing with grief during their university years, but a lot of it is more theoretical than practical (McIlwaine et al. 152). One effective way of training employees on how to deal with death is to first have them recognize the complexities of death and breaking it down into categories based on certain scenarios and experiences. The categories of death are as listed: 1.) Death of a pet 2.) Death of a loved one 3.) Distress related to the grief others, and 4.) Distress related to the process of dying in a professional environment. By categorizing death this way, medical staff can learn how to be sympathetic towards patients and their families during the end-of-life process, but still remain professional, understanding that death is a common occurrence in the field of medicine, and to not be so emotionally distressed by its presence (McIlwaine et al. 156). When dealing with death, medical staff must also understand their individual roles as well as the roles of their colleagues and how everyone fits into the framework. Regardless of who does what, all staff members should be well-equipped with effective communication skills
  • 8. in the event of death. Many seminars and workshops that teach medical staff on how to work with death emphasize awareness of feelings prior to dealing with patients and their loved ones. Along with this awareness, teaching staff how to break bad news to family members and preparing themselves with how to deal with loved ones in the aftermath of a death are vital skills in today‟s healthcare facilities that are not being taught enough (McIlwaine et a. 152). Another way to prepare staff for death is to train to be able to look for physical signs of a patient‟s physical deterioration during their end-of-life stay in medical facilities. As a patient‟s body weakens during the process of death, signs to look for as a signification of their weakened state include a decreased intake of fluids and food, decrease in levels of consciousness, and changes in breathing patterns. One notable symptom that can be unsettling for healthcare staff is a respiratory noise known as the “death rattle” that usually comes when death is nearing. The death rattle is a repetitive migration of secretion fluids in the pharynx and trachea. The migration of these fluids occurs at the same time of respiration, hence the sound it creates. The death rattle is a symptom that occurs in 40 to 90 percent of terminally-ill patients. Research has shown that 41 percent of terminally-ill patients start experiencing the death rattle roughly three weeks prior to their deaths. The death rattle has also been a strong indicator of death‟s impending presence, with as much as 76 percent of patients experiencing the death rattle 48 hours prior to their deaths (Hipp and Letizia 17). Understanding the Role Nurses Play in End-of-Life Care The role of nurses in today‟s healthcare often goes overlooked, and should be looked at as an integral part of hospice care. It is reported that a majority of deaths in the United States and most of Europe take place in hospitals, which puts nurses, more so than doctors, at the frontline when dealing with the terminally-ill patient population. Quality of death not only
  • 9. affects patients and their families, but has been reported that nurses can feel traumatized and burned out from dealing with terminally-ill patients, especially if these patients have suffered though prolonged pain and physical agony. Studies have shown that when patients feel their end-of-life healthcare provider has made their transition towards death painless and manageable, nurses will also perceive the situation as a positive one as well (Costello 594-595). A study conducted in 1999 used in-depth interviews to ask a group of nurses how they felt about hospice care and what they perceived as a “good” death and a “bad” death for the patient, the patient‟s family, and for themselves. Not surprising was that nurses perceived quality end-of-life care as beneficial to their morale and work effort, and poor quality hospice care as detrimental to their morale and their ability to work(Costello 596). In other words, nurses feel just as affected by a terminally-ill patients and their condition as their family members do. In terms of what made a patient‟s death a positive experience for nurses, the death needed to be expected; communication between family members, the patient, and medical staff had taken place; the patient‟s needs were not overwhelming to take care of; and the patient‟s pain symptoms were minimal. Most importantly, the nursing staff needed to feel that they had maintained some control over the situation and were able to do everything they could (Costello 597-598). Nurses have also indicated that they view the needs of the family just as important as the needs of the patient (Peterson et al. 184). When dealing with a “bad” death, the nurses who participated in the study said a lack of control over the patient‟s situation was the biggest component to a “bad” death. From patients who suffered from prolonged symptoms to even sudden and unexpected deaths, nurses had stated a preference for preparing patients and their relatives. Nurses had also indicated that they felt doctors played a role in “bad” deaths when they not only ignored open communication between
  • 10. the patient and his or her relatives, but also when the doctor was not openly communicative with the nursing staff (Costello 598-599). Hospice care can be very tiring and stressful for nurses, particular those who are illprepared and ill-informed in regard to a patient and his or her needs. It‟s no surprise that the United States is facing a shortage of nurses and many areas of medicine are seeing high turnover with nursing staff due to the stress of the job. Nurses are expected more than any other medical staff member to overlook and take care of the patient‟s needs. Nursing staff is also expected to care for the needs of the family. Nurses who struggle to cope with death are more likely to suffer from psychological burnout and may even distance themselves in future patient-nurse relationships (Peterson et al. 181-182). Based on the research regarding nurses and their roles in hospice care, it is safe to say that only do they play an intricate role in the process of making a patient‟s end-of-life care easier, but they act as gatekeepers and liaisons between medical facilities and patients. When doctors and healthcare administrators diminish a nurse‟s presence during end-of-life care, they are diminishing their patient‟s ability to receive quality care. Nurses must feel prepared, informed, and in control in order to fully administer quality care for terminally-ill patients. Death and Other Cultures: East vs. West As mentioned earlier with the Veatch article, definitions of death vary greatly in different world religions and cultures. For Native American and Japanese cultures, defining death as either death of brain functions or cardiac functions would not be acceptable (Veatch 18). Because death and its definition are very subjective to many cultures, doctors and healthcare administrators must seek to understand the needs of multicultural patients instead of rejecting their beliefs.
  • 11. Even with all its modernity and industrialization, Japanese culture still holds strong ties to its past and its ancient ancestral heritage. Veneration of older family members and dead relatives is a normative value in Japan. Japanese view family, history, and tradition as sacred in their culture. Family ties are the conduit to which they feel holds modern family and ancestral heritage together to co-inhabit peacefully (Valentine 35). A “good” death in Japanese culture can be defined as a way of properly transitioning from the material world to the spiritual world. Often, a “good” death encompasses dying at home, surrounded by loved one, as peacefully and as painlessly as possible. This transitional period is so important, after the death of a loved one, family members are required to gather every seven days for a seven week period to encourage their loved ones descent into the spiritual realm. Since the Japanese believe in harmonious and peaceful deaths, pain and suffering until the end would constitute as a “bad” death. Deaths that also sudden, violent and abrupt also constitutes as a “bad” death. Murders, suicides, accidents, and any type of premature death is not only disruptive to the transitioning period to the spirit world, but is considered troublesome to the living family members. It is believed in Japanese culture that if a person was to die in a state of sadness or agonizing death, his or her spirit would become restless, vengeful, or even malignant (Valentine 37-38). Hospital deaths are often associated with “bad” deaths because the Japanese view hospitals to be unsavory environments that lack a harmonious flow. Because of the stigma surrounding dying in hospitals, Japanese doctors are encouraged and pressured to keep a patient alive as long as possible. Stemming from this fear of death, it has been reported that doctors have been encouraged to perform CPR on cancer patients, even when death was imminent, and
  • 12. families prolonging the decision to take loved ones off ventilators were not uncommon occurrences in hospital-death settings (Valentine 38-39). Although Japanese culture puts an emphasis on spiritual transitioning during death, their desire to die in a peaceful and painless manner at home, surrounded by loved ones, is not so different from Western views of a “good” death. What makes them different is the desire to prolong the dying process if they feel their family members are not dying in a proper environment where a “good” death can occur. For Western doctors, dealing with Japanese patients and their desire to prolong the dying process might prove tough, especially if that doctor feels he or she would have to violate the Hippocratic Oath. In Chinese culture, death must also be a harmonious process where the material body can descend from the material world to the spiritual world. However, death is also a taboo topic in Chinese culture. To speak of death would bring a bad omen to those who openly discuss it and to their families. Even illnesses considered minuscule in Western medicine, such as a cold, is considered bad luck to discuss in Chinese culture. Chinese culture and its views on death can be traced back to its ancient ties to philosophies of Taoism and Buddhism. Both religions promoted achieving a prolonged life and immortality as the ultimate goals for all human beings. Despite their philosophies rooted in Taoist and Buddhist beliefs, the Chinese do understand that death is an inevitable occurrence and only certain circumstances allow for a “good” death. When a family member is on his or her death bed, he or she must be moved to the main hall of the house at the time of death. Even if the patient had been receiving end-of-life care at a medical facility, that patient must return home to die in the family home, in front of the ancestral
  • 13. alter. In the presence of the alter, family members believe that their loved one can achieve their place amongst their ancestors (Hsu, O'Connor and Lee 166-167). A study conducted in Australia revealed that Australian healthcare providers had difficulty discussing ailments, such as cancer, with Chinese patients and their families, as they believed it was both bad luck to discuss it and that its cause was rooted in supernatural forces (Hsu, O'Connor and Lee 168). From a Western medicine viewpoint, establishing autonomy and gaining informed consent would be extremely difficult when dealing with Chinese populations. While still respecting the family‟s wishes to avoid talking about the topic, the doctor may still have to discuss prognosis and treatment with the patient. When dealing with patients from different religious and cultural backgrounds, healthcare providers will have to use discretion in deciding how to respect a patient‟s autonomy while still upholding their Hippocratic Oath. As brushed upon in the section regarding training medical staff to prepare for death, additional training should needed when dealing with multiculturalism in the medical field. According to Veatch, there is no right or wrong way to define death. The definition of death, according to him, is still a personal choice (18). Discussion End-of-life discussions might be an awkward and uncomfortable topic for physicians, their patients, and family members, but the communication between all parties needs to begin as soon as possible in order for expectations to be met. Doctors need to know what is expected of them and what their patients expect to happen during the duration of their care. Patients need to know what type of treatment, symptoms, and a timeline of progression to expect during their timeline care. Relatives will also need to know type of treatment and care provided for their
  • 14. terminally-ill relative to expect as there will become a time when the decision-making process falls into their hands. When a patient‟s autonomy is established earlier in the process of end-of-life care, they can choose what type of treatment and care they feel is best during their final days or months. One of the most important things for a patient during his or her final days is the ability to feel at ease and to have minimized pain. A healthcare provider must allow for a patient to make these decisions and to be communicative with the patient in order to be able to provide this. Healthcare providers must also be communicative with other staff members involved in the patient‟s care so that consistent and effective care can allow the patient‟s final wishes to be fulfilled. There might come a time during a patient‟s final day when he or she can longer make autonomous decisions, and therefore must leave decision-making up to family members. These decisions can only be considered autonomous if the patient had been able to establish his or her wishes while still cognitive and able to reason. Although autonomy rests in the hands of the patient and later on, the family members, doctors must be aware of these wishes at all times and may even have intervene with a form of therapeutic consent. As we learned in the case of Karen Quinlan and Terry Schiavo, do the patients‟ relatives have autonomy when their final wishes are not being upheld and are these decisions being made under corruptible circumstances? Due to the controversy surrounding topics in death/dying and end-of-life care, informed consent by patients is not only extremely vital to quality end-of-life care, but can make a difference in what role the doctor plays. During the mid-twentieth century, taking a patient off of life support would have been considered taboo and put a healthcare provider liable for the death of that patient. In the aftermath of the Karen Quinlan case, informed consent prior to the
  • 15. patient‟s loss of consciousness has allowed for patient‟s to decide when quality of life and death ends and begins, as well as take away any liabilities on the part of the healthcare provider carrying out these final wishes. Sometimes a patient‟s autonomous decisions during end-of-life care can be hard to fulfill for healthcare providers. When a patient comes from religious or cultural backgrounds whose beliefs on death and dying differ greatly from their healthcare provider, it may make it harder for the healthcare provider to service those desires. As mentioned earlier, Chinese cultural and those practicing Taoism share of a fear and disdain for discussing death, including end-of-life care. This can put many doctors and healthcare administrators in a tough spot. Conclusion While medical advances and new technology change the face of medicine and continue to make strides to improve our quality of life, death and dying are topics that should not be put on the backburner. It seems some people confuse medical advancements improving lifespan as a way to avoid death. Our culture should not fear death, but recognize its inevitability and prepare ourselves for when the time comes. As seen with other cultures, death is widely considered taboo to discuss and embrace. Although research and cultural norms indicate that Japanese and Chinese populations have adverse reactions in the face of death, their fears and avoidance of the topic are no different for our own. Their preferences for dying in a peaceful and painless, surrounded by loved ones, is also no different from our desires during end-of-life care, With overhauls towards universalizing healthcare in the United States just around the corner, doctors, medical staff, and healthcare administrators should embrace end-of-life care; not only for older populations and the terminally-ill, but for everyone to understand that dying and
  • 16. end-of-life wishes can only be improved when openly discussed. End-of-life discussions should not be dreaded topics, but educational and informative conversations. Talking about it now is one step towards making the actual process easier for when it actually occurs.
  • 17. Works Cited Cohn, J, et al. "Population-based study of dying in hospital in six." Palliative Medicine (2008): 702-710. Costello, John. "Dying well: nurses‟ experiences of „good and bad‟." Journal of Advanced Nursing (2010): 594-601. Hipp, Billy and MariJo Letizia. "Understanding and Responding to The Death Rattle in Dying Patients." MEDSURG Nursing (2009): 17-32. Hsu, Chiung-Yin, Magaret O'Connor and Susan Lee. "Understandings of Death and Dying for People of Chinese Origin." Death Studies (2009): 153-174. McIIwaine, L. et al. "The different levels of learning about dying and death: an evaluation of a personal, professional and interprofessional learning journey." Medical Teacher (2007): 151-159. Patrick, Donald L., et al. "Measuring and Improving the Quality of Dying." Annals of Internal Medicine (2005): 410-415. Petersen, J., et al. "What is it so stressful about caring for a dying? A qualitative study of nurses' experiences." International Journal of Palliative Nursing (2010): 181-187. Pugh, Edwin J., Mel McEvoy and John Blekinsopp. "Use of the proportion of the patients dying on an End of Life Pathway as a quality marker: considerations for interpretation." Palliative Medicine (2010): 544-547. Valentine, Christine. "Negotiating a loved one's dying in contemporary Japanese society." Mortality (2009): 34-52. Veatch, Robert M. "The Evolution of Death and Dying Controversies." Hastings Center (2009): 16-19.