It is a fact that humans are born to die. What was once considered a natural part of life has changed to an experience that may be more painful for the patient, family, and caregivers due to the advances in medical care. New procedures have allowed life to be extended longer than ever before. The question is: has the dying experience improved? This paper will include a review of death and dying from the perspectives of the patient and caregivers. An unfortunate case will be discussed, and the organizational structure, culture, and governance that led to this situation will be reviewed. Recommendations for the changes necessary to prevent such cases in the future will be included.
Ms. Smith was a 66 -year -old female with breast cancer that had metastasized to her lungs and liver. She had two adult daughters who lived in her home town and one of them had a young child. Mr. Smith was a 70- year-old retired factory worker. Ms. Smith had gone through lengthy chemotherapy and radiation treatments that had left her weak and debilitated. She developed pneumonia and experienced a respiratory arrest. She was placed on a ventilator and was weaned off the ventilator after two weeks. She remained in the Intensive Care Unit (ICU). Her family stayed with her as much as the ICU visiting hours allowed, but she was often alone and told her family that she was in pain and wanted to die.
The nurses were concerned about her pain needs, but were also worried that too much medication could cause another respiratory arrest. Ms. Smith languished in the ICU for two months until she did have another respiratory arrest and died without her family at her side. She and her family had agreed that she would not go back on the ventilator, and the physicians had written a Do Not Resuscitate (DNR) order. They had planned to move her from the ICU, but they hesitated to place her on a regular floor. Everyone involved in the case believed that it was not handled well, and a team was assembled to determine how to improve the care of the dying.
A review of the literature found that this institution was not alone with their concerns that the care of the dying needed to improve. Autonomy is one of the core bioethical principles that focuses on the right of every individual to make choices regarding health care decisions. Providers and caregivers spend a great deal of time instructing and coaxing patients to take control of their own health. But these providers are often surprised and upset when patients with life-limiting illnesses express a desire to control the timing and circumstances of their end-of-life experience (Volker, Kahn, & Penticuff, 2004). In their study, they found that people with advanced cancer expressed a wide variety of preferences for personal control and comfort, and that many wanted to remain as involved as possible in their daily lives for as long as possible.
Organizations can play a key role in policy changes to support the needs of these individuals. Providers are trained to see death as the enemy, and sometimes forget that death is a natural part of the human experience. Joe Cantlupe’s story in Health Leaders stated that “we don’t always deal with the issues of death and dying very well in our culture” (p. 14, 2013). The Institute of Medicine published a report that concluded that many patients die in pain, are not referred to hospice in a timely manner, and the improvements in care have not led to improvements in care at the end of life. Fortunately, there have been efforts to study the patient’s perspective of death and dying as well as the perspectives of nurses and physicians. These studies are leading to a better understanding of the experience and the methods needed to improve the quality of end of life care (Cantlupe, 2013).
It may seem strange to consider quality about end of life care, but it is recognized as an ethical obligation of health care providers and organizations. Singer, Martin, and Kelner studied 126 patients on dialysis, diagnosed with AIDS, or residents of long-term care facilities, to determine their views on end-of-life issues. Their results identified five domains of quality care at the end-of-life. These were “adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones” (p. 163, 1999). The participants expressed fear of lingering or kept alive when they could no longer enjoy their lives. Many stated that they would not wish to go on life support if they were not going to improve or have a chance to live a normal life again. Several mentioned that being placed on life support was the same as being a guinea pig. There were conflicting reports on the choice of dying at home or in a hospital.
Some wanted to be at home, but others felt that was a burden on the family (Singer, Martin, & Kelner, 1999). Another study by Gourdji, McVey, & Purden in 2009 interviewed palliative care patients about the meaning of quality of life at this stage of their illness, and the factors that would improve their quality of life. They found that several factors, including their approach to life, their approach to their illness, and their ideal of quality of life shaped their end-of-life experiences. These patients stressed that they most wanted to continue what they had been doing for most of their lives for as long as possible. They also wanted to help others when possible and live in a caring environment. They often mentioned the use of humor and a positive attitude in the environment. When they discussed their illnesses, they expressed frustration with their physical limitations, and hopelessness when the disease reoccurred.
As providers began to understand the gap between their traditional training and the needs of patients, researchers began to evaluate the skills needed to provide a better quality of end-of-life care. Nursing had long considered the choices made about artificial nutrition or hydration, palliative treatment, or symptom control to be in the medical domain, and the nursing role was often unclear. Nursing is involved in the end-of-life care. They are with the inpatient on a 24-hour basis, they use a patient-centered approach to care, and they have experience and expertise in caring for dying patients and their families. Case studies have found that the nurses’ involvement in end-of-life care is not only about the technical decisions in the care process, but also that the daily interactions that nurses have with patient’s vulnerabilities make them ethically sensitive to the needs of the patient and family (Gastman, 2012).
The International Council of Nurses (ICN) developed a code of ethics that stated that nurses are responsible to alleviate suffering as well as promoting health and preventing illness. By expanding the scope of end-of-life care beyond the narrow medical definitions, and aligning the code of ethics with a broader definition of end-of-life care to expand beyond the hospital setting, nursing can become more involved in end-of-life care (Shigeko, Nague, Sakuai, & Imamura, 2012). The role of the primary care provider in end-of-life care has also been studied, and these studies have found that despite the continuity and comprehensiveness of primary care, few Americans die under the care of their familiar provider. Many patients have reported feeling abandoned by their primary care provider at the time of death. Care at home by primary care providers benefits many patients and the health care system overburdened by hospitalization cost (Silveira, & Forman, 2012).
On the other side of the care spectrum, the role of the intensive care provider also can be improved. White and Curtis (2005) studied the need and the impact of shared decision- making on critically ill ICU patients. They found that while involving families in end-of-life decisions is a complex task that requires excellent communication skills, the more time spent with families discussing and explain the issues, the higher the family satisfaction. The hospital where Ms. Smith died was the average institution with an organizational structure that included a Chief Medical Officer and Medical Directors of each specialty area. There was a Chief Nursing Officer as well as Nursing Administrators responsible for the care of patients. They had been very focused on treating illness, and considered themselves successful. The review by the improvement team helped them to see that they needed to change their perspective and consider less paternalistic alternatives to caring for patients at the end-of-life.
These alternatives usually save cost as well as providing better care at end-of-life. The reimbursement for palliative care programs has been slow, and this has prompted many hospitals to team up with local hospice programs or nursing facilities to decrease cost. Palliative care has been shown to extend the life of patients, reduce cost, and be more satisfying to the patient and family. Multidisciplinary teams that include physicians, nurses, social workers, psychologists, and spiritual counselors, work together to relieve the suffering, pain, depression, and stress that is often a part of chronic illness. These teams may also include nutritionists and therapist when needed by the individual patient. These programs listen to even the simple requests of patients and families. They work with the patient to get them to the best environment for them and to allow them dignity and control at the end of life. These teams are also moving to the outpatient area to prevent or decrease hospital admission and improve quality of life (Cantlupe, 2013).
Ms. Smith’s hospital should implement a multidisciplinary palliative care team. They should also add education to the program so that the patients and families are better informed about the results of care decisions such as ventilation, hydration, and nutrition. The hospital personnel need to be trained about palliative care and shift their paternalistic approach to a patient-centered approach. It is doubtful that Ms. Smith would have remained in the ICU for two months if there had been a palliative care program in place. She may have been able to transfer to an inpatient hospice center where her family could stay with her, and she would not have died alone and in pain.
Cantlupe, J. (2013, September). A fresh look at end-of-life care. Health Leaders, 12-22. Gastman, C. (2012, September). Nursing ethics perspective on end-of-life care. Nursing Ethics, 19(5), 603-604. Retrieved from http://search.proquest.com.ezproxy.apollolibrary.com/docview/1041054841 Gourdji, Iris. McVey, L., & Purden, M. (2009, Spring). A quality end of life from a palliative care patient’s perspective. Journal of Palliative Care, 25(1), 40-50. Izumi, S., Nagae, H., Sakurai, C., & Imamura, E. (2012, September). Defining end-of-life care from perspectives of nursing ethics. Nursing Ethics, 19(5), 608-616.