Nursing College, Kyungpook National University, Daegu 41944, KoreaSouth Korea
Department of Nursing, Kyungpook National University Hospital, 130 Dongdeok-ro, Jung-gu, Daegu 41944, KoreaSouth Korea
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Currently, hospice care which focuses on caring for a terminally ill person delivers holistic, supportive, interdisciplinary, and patient-centered management. There have been nu-merous efforts to establish hospice care for people who are in the end-stage of their illness.
Opinion Transforming End-of-Life Care * *Corresponding author Eun Hee Oh, RN, PhD 1 2* Bok Yae Chung, RN, HNP, PhD ; Eun Hee Oh, RN, PhD Department of Nursing Kyungpook National University Hospital, 130 Dongdeok-ro 1Nursing College, Kyungpook National University, Daegu 41944, Korea Jung-gu, Daegu 41944, Korea 2 Department of Nursing, Kyungpook National University Hospital, 130 Dongdeok-ro, Tel. +82-53-200-5170 Jung-gu, Daegu 41944, Korea Fax: +82-53-200-5171 E-mail: misum1999@naver.com Currently, hospice care which focuses on caring for a terminally ill person delivers Volume 2 : Issue 2 holistic, supportive, interdisciplinary, and patient-centered management. There have been nu- Article Ref. #: 1000PMHCOJ2114 merous efforts to establish hospice care for people who are in the end-stage of their illness. Article History Palliative care is an approach that improves the quality of life of patients and their th Received: July 27th, 2016 families facing the problem associated with life-threatening illness, through the prevention and th Accepted: September 13th, 2016 relief of suffering by means of early identification and impeccable assessment and treatment th Published: September 14th, 2016 of pain and other problems, physical, psychosocial and spiritual (WHO). Hospice care which is a subset of palliative care focuses on controlling pain and other symptoms of illness so pa- tients can remain as comfortable as possible near the end of life. The meaning of hospice care Citation throughout this study is a supportive care to people in the final phase of a terminal illness and Chung BY, Oh EH. Transforming focus on comfort and quality of life.
end-of-life care. Palliat Med Hosp Care Open J. 2016; 2(2): 21-25.
doi: 10.17140/PMHCOJ-2-114 Hospice care for people with end-stage illnesses, which can involve complex end- of-life care in a wide variety of settings, including bio-psycho-social symptom management, care related to cultural and ethical issues, bereavement care, and after-death care. Hospice care affects the end of life experience tremendously.1 However, let us consider hospice care at this time. Does hospice care really deliver the right care for people in the endstage of their lives? What level of hospice care do most hospice patients receive? How many people can be sup- ported with hospice care by the government for a dignified death? For how long is hospice care required for an appropriate or good death? How much respect is there for the human rights of people in hospice care?
Human dignity and human rights in end-of-life care are very important in terms of a person’s identity and values, and they are accorded to and respected in everyone using hospice 2-5 care services.2-5 It is the responsibility of every hospice professional to know how to provide 5-7 high quality care to people with end-stage illnesses in view of their human dignity.5-7 This paper provides an overview of transforming end-of-life care. It describes not only the highest quality care for people who have had a life-limiting illness but also the trends of preparation for death, respect for the free will of people, receiving professional hospice care, and quality care after death.
The goal of this paper is to contribute to the development of future hospice care from the perspective of the dignity of people. Much needs to be improved in areas such as hospice philosophy and practical support for transforming end-of-life care. Copyright HIGHEST QUALITY CARE ©2016 Oh EH. This is an open ac- cess article distributed under the The highest quality care in Hospice refers to the quality, compassionate care of people fac- Creative Commons Attribution 4.0 ing life-limiting illnesses. Compassionate care is also holistic care. People facing life-limiting International License (CC BY 4.0), illnesses need compassionate access to a more systematic way to meet their holistic needs. which permits unrestricted use, distribution, and reproduction in Compassionate care becomes a strong and powerful interaction that encourages the patient to any medium, provided the original participate.
The approach of compassionate care takes into account Gauthier14 mentioned that terminally ill adults make the physical, emotional, and spiritual needs of each person. The decisions based on a broad set of factors that influence how one method of delivering compassionate patient care is a ready-to-go responds to everyday challenges. In his study of decision mak- solution to a very real problem, which involves supporting the ing near the end of life, he also reported that open and honest 8-11 patients and helping to meet their needs.8-11 communication about sudden functional changes in the context of chronic illness might allow individuals to choose hospice or The hospice care profession also provides spiritual and palliative care earlier in the trajectory of their illnesses. There- emotional support to hospice patients. Hospice providers en- fore, a hospice care team prepares the dying person to respond courage individuals to discover meaning and purpose as peace- in ways that will help him or herto accomplish this transition. makers. They provide support during difficult decisions while These teams also support and understand the responses of peo- respecting individual beliefs. Spiritual care may or may not in- ple in the final stage.
Preparing for death is a great gift of love as this mo- PREPARING FOR DEATH ment approaches. The person is ready for this release emotion- ally, spiritually, and mentally because others will continue to live Preparing for death is one of the most empowering actions. As until the shutdown process ceases. All end-of-life choices and people approach the end of their lives, they commonly face decisions have a significant impact on suffering, quality of life, many decisions that range from simple to extremely complex.
and dying. People in this context may make choices about how Dying persons and their families are faced with choices about to spend their limited time and energy. The time of preparing what they want or need. These people can be prepared for death for death is a time to give full acceptance, support, and com- when they know their exact situation in detail.
fort. People also frequently make legal decisions about wills, advanced directives, and durable powers of attorney at this time. These decisions may be physical, psychosocial, spiritu- al, or legal in nature. Each decision should ideally be considered The person approaching the dying process keeps in his in terms of relief of suffering and the values and beliefs of the or her mind the unresolved or un-reconciled important issues or 12-14 some significant relationships even as all of their physical sys- dying individual and his or her family.
tems cease to function. Preparing for death needs to happen in a way that is appropriate and unique to the values, beliefs, and At the moment, when people die, they leave their physi- lifestyle of the dying person. It is closely interrelated with his cal bodies behind. They pass through a dark tunnel to a transcen- or her physical, psychosocial, spiritual, and economic situation. dent spiritual existence. After they die, their family and friends Therefore, well-intentioned care by health care providers may remain. The emotional-spiritual-mental function involves a dif- overlook a particular person’s wish not to discuss death.
ferent kind of process. The spirit of the person in the final pro- cess may need resolution of unfinished issues and relationships RESPECT FOR FREE WILL with life. The spirit completes its natural process of reconciling and finishing in a way that is appropriate and unique to the val- Free will is a freedom of choice and self-determination without ues, beliefs, and lifestyle of the dying person. Some may want external restraint when there is a choice of possible actions. Re- to reflect on the meaning of life, some may decide to conduct a spect for the free will of people who are in the last days, weeks, final life review or deal with psychologically unfinished busi- and months of life requires hospice health professionals to un- ness, and some may want to participate in planning rituals before derstand the extent to which their preferences are being met. Re- or after death. The most appropriate responses to the emotional- spect for the free will of people who are in their last daysmeans spiritual-mental changes are support and encouragement about improving the understanding of their needs and wishes by cap- the resolution and the transition.
turing their preferences and sharing the information when caring for the dying people. For example, a hospice health care team Waldrop and Meeker identified five decisions that should consider how and where people hope to die and what they people make before the end of their lives: (1) operationalizing are concerned about. Each team should consider which type of advance care planning, which is a renewed focus on decisions care makes the most sense for each person. Hospice care in gen- about care at the end of life; (2) surrogate decision making, in eral can take place in different settings, including hospitals, out- which caregivers begin making both informal and formal deci- patient palliative care clinics, nursing homes, certain other spe- sions for the dying person; (3) meaning-making, in which the cialized clinics, and the home. The Patient Self-Determination foreshortened time brings into focus decisions about seeing spe- Act (PSDA) of 1990 was developed to ensure that these rights cial people, attending events, and creating memories; (4) loca- were protected, including the fundamental rights to treatment tion of death, which involves decisions about whether the person choices, informed consent, truth-telling and open communica- wants to, and can remain, at home to die; and (5) final acts, in tion with health care providers, and control over the individual’s which decisions about funeral arrangements, wills, and leaving own life and death. The core values of hospice care emphasize a legacy become central.
autonomy and individual rights to make life choices, especially health care choices. The health care provider in a hospice must their own individual experiences. The dignity of the deceased have a clear understanding and recognition of the patient’s de- is not overemphasized because he or she had an individual ex- 15,20 sire. It is important to remember that people are aware of their perience. A dignified death means not only the alleviation of own values, hopes, and beliefs.
bodily suffering and pain but also the meaningfulness of death. The quality of care after death largely depends on whether staff PROFESSIONAL CARE members have received training in taking care of dying pa- tients.21 The professional care of people who are dying is mandatory for all hospice health professionals involved in end-of-life care, End-of-life care calls on the skills of many different which includes skills for communicating with and supporting professionals and individuals to meet the patient’s many re- 16,17 families and their advocates. The hospice care providers in- quirements. Crucially, there is only one opportunity to ensure clude hospice nurses, doctors, social workers, physical, speech, good care after death, and it is not easy to coordinate everything occupational, or dietary therapists, home health aides, spiritual that needs to happen. Guidance, therefore, is a good practice, counselors, and volunteers as well as someone who is available as is confirming a process by which everyone who is involved as the primary caregiver at home. This person may be a spouse, can ensure that the experience for those coping with the loss of partner, or other relative, such as a son or daughter, or even a someone important to them is as good as it can be. This whole neighbor or a team of people from the community.
process should be set within the context of the deceased’s wishes about care arrangements, and family members should be given Hospice care is most affected by the differences of the information and support. Stuart et al22 identified after-death care social and cultural recognition and the policy of the countries. as care/counseling of the family, religious/cultural requirements, So, professional hospice care should be made by considering the staff availability, and the presence of funeral directors and pas- cultural aspects.
Professional hospice care is intended to help people CONCLUSIONS AND RECOMMENDATIONS who should be respected during every moment of their final days. Hospice professionals should help them using their professional The goals of this paper were to explain the transformation of end- knowledge and experience because they support the final-stage of-life care with a foundation of dignity for palliative patients 18,19 patients who have special psycho-socio-spiritual problems.
and to develop a conceptual framework for the future perspec- Hospice care providers serve not only to reduce physical suffer- tives of people approaching death. The quality end-of-life care ing but also to help patients and their families spend meaningful in future should involve the highest quality care, preparation for time together. Hospice care professionals have helped patients death, respect for free will, professional hospice care, and qual- and families to hold a family meeting to reassure the patient that ity care after death with a view to human dignity (Figure 1). everyone is ready to let go. Therefore, the members of hospice care teams want to know what to expect and how to respond in ways that will help the people who are in transition with support, understanding, and ease. Also, Chochinov3 proposed a model dignity and dignity-converting intervention for patients serv- ing nearing death by therapeutic conversation. Through dignity therapy, patients will be able to reduce psychological, spiritual and existential distress and to send the end of life with dignity. QUALITY CARE AFTER DEATH Human dignity is that all humans should be treated with respect regardless of sex, race, gender, class, nationality, religion, or oth- er divisions. The dignity of the deceased is not overemphasized 15,21 because he or she had an individual experience. A dignified death means not only the alleviation of bodily suffering and pain but also the meaningfulness of death. The quality of care after death largely depends on whether staff members have received 22 Figure 1: Transforming end-of-llife care.
training in the care of dying patients. Quality care after death reflects the importance of caring for the deceased body and the family because they have had their own individual experiences. It is complex and challenging, but the principal aim is to support people to die well in their preferred death. Good end- Quality care after death reflects the importance of car- of-life care aims to treat people with dignity and respect in care. ing for the deceased body and the family because they have had Some people who are able to access hospice and special pallia- tive care in communities or hospitals receive high standards of caregivers in chronic illness. Int J Palliat Nurs. 2006; 12(9): care in their final weeks, days, and hours, but many others do 438-445. Web site. http://www.magonlinelibrary.com/doi/ not. Despite the higher quality of end-of-life care and increas- abs/10.12968/ijpn.2006.12.9.21872?url_ver=Z39.88-2003&rfr_ ingly high-level qualitative data to support this, there is still a id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed. Accessed significant fragmentation of services and widely variable quality July 26, 2016 of care. A goal should be set for hospice and end-of-life care involving quality of care to increase annually.
11. Williams AM, Eby JA, Crooks VA, et al. Canada’s Compas- sionate Care Benefit: Is it an adequate public health response CONFLICTS OF INTEREST to addressing the issue of caregiver burden in end-of-life care? BMC Public Health. 2011; 11: 335-350. doi: 10.1186/1471- The authors declare that they have no conflicts of interest.