Epistemological Concerns In Ethnographic Research

A person’s life can end at any age. They can depart quickly or slowly. End of life care, also known as palliative care, is the care of patients that are not only in their final hours or days but the patients with a terminal illness that has become incurable. End of life care takes into mind what the patient desires so it is recommended that they consider an advanced care plan also known as an advance directive and living will. These documents allow the patient to formulate decisions on the future of their care if, at any point, they cannot vocally express themselves.

Death is inevitable. It is one of the only certainties in life. Regardless, people are often uncomfortable discussing death. Nyatanga (2016) posits that the idea of no longer existing increases anxiety and emotional distress in relation to one’s mortality. Because of the difficulty in level of care for end-of-life patients, the patient and the family often need professional assistance for physical and emotional care. Many family caregivers are not professionally trained in medicine, and this is where hospice comes into play. Hospice aims to meet the holistic needs of both the patient and the patient’s family through treatment plans, education, and advocacy. There is a duality of care to the treatment provided by hospice staff in that they do not attempt to separate the patient’s care from the family’s care. Leming and Dickinson (2011) support that hospice, unlike other clinical fields, focuses on the patient and the family together instead of seeing the patient independent of the family. Many times in hospitals, the medical team focuses solely on the goal of returning the patient back to health in order for them to return to their normal lives. They do not take into account the psychological and spiritual components of the patient’s journey and the journey that the family must take as well. For treatment of the patient, Leming and Dickinson agree that hospice does not attempt to cure patients, and instead concentrates solely

1.1 Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care.

Caring for patients at the end of life is a challenging task that requires not only the consideration of the individual as a whole but also an understanding of the

Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care.

Before I started this class I thought palliative care was only used as end of life care, or for when a curative treatment was unavailable or had failed. As we learned about the different models of care, and how they have changed over the years, it became evident that the use of palliative care has changed drastically over the past several decades. In the 1800s to 1900s, palliative care was only used once the patient had reached the dying stage, and only included the patient in this care, not their families1. Before taking this course, this is what I thought of palliative care as well. Since the late 1900s though, palliative care has been used in a more proactive approach. From the moment an individual receives a life threatening illness, palliative care begins. This includes caring for the family of the patient as well. This care increases as the patient’s illness progresses, and even continues for the family after the death of the patient. Learning this has really made an impact on how I would like to work as a

Emmanuel LL, von Gunten CF, Ferris FD. The Education for Physicians on End-of-Life Care (EPEC) Curriculum. 1999.

Comparatively, Bailey et al. (2014) studied the effects of implementing interventions to improve end of life care for inpatient veterans. The problem statement was determined to be that end of life care in the inpatient setting was lacking, which drove the aim of the study to improve EOLC and to minimize suffering of the patients (Bailey et al., 2014). The researchers theorized that this could be accomplished if recognition of end of life was increased and if home-based palliative interventions were implemented. Therefore, the team sought to study the effectiveness of implementing staff education of three items: evaluating patients who are actively dying, communicating end of life interventions with patients and families, and implementing home-based best practices for end of life care (Bailey et al., 2014). The purpose here was to improve inpatient end of life care.

Despite significant advances in the multidisciplinary approach of palliative care and the growing body of evidence-based practice, a multitude of variables continue to interfere with excellence in end-of-life care for everyone (Anonymous, 2007). Because of this the primary nurse must be diligent in administering the proper medications to allow the patient to have minimal pain or suffering and provide emotional support and reassurance to family members, and possibly fellow staff members

This paper will explore what would entail “A good Death”. I will discuss Pain Control, No Excessive Treatment, Retention Of Decision Making By The Patient, Support For The Dying Patient And His/Her Family And Friends, Communication Among All Parties And Acts Done Out Of Love That Make Dying More Difficult.

There is a need for evidence on palliative care because improving strategies could potentially improve the patients end of life care and could ensure that they die in a dignified

Palliative care is a relatively new concept. Palliative care programs have become more numerous and better utilized since 2000 and continue to grow. It is now accepted that the palliative care model is appropriate for patients with life-limiting illnesses. Chan et al. (2013) stated that the ultimate goal of palliative care is to relieve suffering and to maximize the quality of life for dying patients and their families, regardless of the stage of illness or the need for other medical treatments (p. 133). As life-expectancy increases, there is a growing need for these services. People are living longer with chronic diseases and palliative care services can provide an extra layer of support to patients and their families. Evidence has shown that 13% - 36% of hospital inpatients qualify for palliative care services (Robinson, Gott, & Ingleton, 2014).

Quality of Life and Functioning for End of Life Care. HAT2 Community Health Nursing. Western Governors University.

In fact, the human development model proposes that it is important to teach patients how to embrace their death and appreciate life. Receiving medical care does not prolong life for the better, but in fact weakens the body functions by stressing the body leadingitto death. Medical care does not lead to a better quality of life because it causes suffering to the patients due to them constantly being sedated or kept strapped. According to “TheCost of Dying End-of-Life Care” a majority of patients wish to die in a comfortable setting such as their own home or a family member's home, but about 75% of patients die at a hospital or nursing home. Furthermore,hospice care is the care that patients receive as moral support during their final phase of life as well as focusing on the patients comfort instead of looking for a cure.

According to the survey of WHO 2011a end of life care patient suffer unnecessarily due to underassessment and treatment of their problem due to lack of access and awareness of palliative care. Office for national statistics 2013d for bereavement survey suggests that most likely the patient with cancer receive high quality and dignified end of life of care. Survey also suggested that dignity and respect rated high in hospice and low in acute hospital settings. Patient who are very frail and have dementia, experience poor end of life care due to less involvement in advance decision process about their care (Alzheimer's society 2008).Study suggested that 40% of people who died in hospital did not need treatment and nearly most of them have been in hospital for over a month (Nation Audit office 2008).Hospital is considered least choice for end of life care so localities show the wide variation in capacity and place of