Kubler-Ross Research Articles

Learning from Others: International Comparisons of Death and Dying

Death comes to us all, but attitudes towards death vary greatly. Take Dylan Thomas (“Do not go gentle into that good night; rage, rage at the dying of the light”) and Elisabeth Kubler-Ross (“Dying is nothing to fear. It can be the most wonderful experience of your life.”), as examples. The Commonwealth Fund's latest International Health Policy Survey (Osborn et al. 2014) also shows that how we prepare for ill health or death varies considerably around the world. In France, for instance, only 12% of seniors living outside of healthcare institutions say that they have had a discussion with family, a close friend or a health professional about the healthcare treatment they want if they become very ill and cannot make decisions for themselves. That compares with 78% in the US, 72% in Germany and 66% in Canada. Across all 11 countries included in the survey, the proportion of seniors who said that they had a written plan describing treatment that they want at the end of life was lower. It ranged from 4-5% in Norway, Sweden and France to 46–58% in Canada, the US and Germany. Interestingly, there is much less variation in the settings in which older adults die. A 2013 article (Broad et al. 2013) compiled the latest published rates of place of death for 45 populations, including data for 10 of the 11 countries included in the Commonwealth Fund survey. Among these countries, the authors found that deaths in hospital or residential aged care facilities varied from 65% in New Zealand to 80% in Australia. In both cases, as always, caution is required in interpreting international comparisons. Nevertheless, they do provide a prompt for a number of important policy conversations – comparisons being a type of mirror through which we have the potential to better understand ourselves. Authors in this issue of Healthcare Policy/Politiques de Sante use these and many other techniques to illuminate important policy, research and practice questions facing the health sector today. These range from how to capture patient perspectives on primary and community care outcomes to drivers of spending on prescription medications. Also in this issue are contributions on how best to share and apply new knowledge, including an online repository of documents addressing healthcare renewal and the research–policy divide for oral health inequality. Whatever your role in health policy, I hope that the thoughtful commentary and new research published in this issue of Healthcare Policy/Politiques de Sante offers interesting new insights and perspectives for you.

The Real Place of a Princess: Public Response

The late Princess Diana of Wales (1961-1997) is one of the leading figures in the twentieth century. She used her fame as a British royal member to shed light on important humanitarian issues such as helping the homeless people, fighting against AIDS, donating money to cancer patients, supporting diseased children, and banning landmines. Her life has proven that she is one of the few celebrities who care for people; especially those in dire need. This is why she earned titles like ‘queen of people’s hearts’, ‘people’s princess’ and ‘England’s rose’. Diana’s death in a car accident has shocked the world and put it in great grief. The accident is considered by her public to be a terrible tragedy. This paper attempts to shed light on the emotional response that followed the princess’s death by studying twenty poems that were produced after her sudden death. Such poems reflect the huge influence that Princess Diana had and still has till this moment on the British way of life and thinking. The poems also assure that the real place of Diana is in her people’s hearts and memories. They also make it obvious that the sky is a better place for her; to be away from oppression and suffering. This paper will also apply the five stages of grief introduced by the psychiatrist Elisabeth Kubler-Ross to the poems in order to uncover the reasons behind giving Princess Diana such saint-like position by the public.

The Leader as Artist

The Leader as Artist

Uma releitura da obra de Elisabeth Kubler-Ross

This article presents a reappraisal of part of the works of Elizabeth Kubler-Ross, one of the most quoted authors addressing the end of life process, mourning and dying. Her work has contributed to a clearer understanding of these issues by health professionals, families, religious and lay people who handle and/or experience mourning. She has also been the subject of controversy related to ethical issues and the scientific rigor of her work. The books analyzed in this article are: On death and dying (1969); Questions and answers on death and dying (1971); Living with death and dying (1981); On children and death(1983); On life after death (1991) and Life lessons (2000).

Understanding lead dysfunction: Managing lead failure grief

In two prior editorials, I considered the vulnerabilities of implantable devices and their leads. I am pleased to report that substantial progress has been made in dealing with implantable devices, largely due to the collaboration of multiple medical societies, regulatory and governmental authorities, device manufacturers, physicians, scientists, and allied professionals. Unfortunately, the response of the medical and scientific community has been uneven and at times surreal, taking on a life of its own, sometimes defying the mandate not to do harm. As we continue to experience the “less than perfect” paradigm, an increasingly clear concept has come into focus; management of patients with implantable cardioverter-defibrillators (ICDs) follows broad themes but requires individualization. Not only must we treat each patient as an individual with unique clinical and personal characteristics, but in this case we need to individualize each patient based on the specific lead involved. Although obvious to some, clarity has not been conspicuously manifest in the medical community’s evaluation of each condition or the development of specific care strategies. Useful classifications have been developed, completely dependent upon specific circumstances. In 1969, Elisabeth Kubler-Ross described a useful framework that continues to facilitate grief management. In On Death and Dying, denial, anger, bargaining, depression, and acceptance are concepts that not only appear to apply to people in respect to death, but seem to resonate with our experience with implantable devices and, in particular, ICD leads. My earlier editorials related largely to denial exhibited in the medical and scientific community, the general public, the press, and the patients. We unrealistically expected something much different. Subsequently, many of us exhibited anger, bargaining, and depression. It is time to develop a more specific framework to work through the process of acceptance in the least damaging way possible. I propose that we step back and consider a strategic approach to the evaluation of vulnerable ICD therapies. In this issue of HeartRhythm, Cheung et al describe the mechanisms, predictors, and trends of electrical failure of the Riata family of leads (St. Jude Medical, Sylmar, CA) using retrospective observational methods. I want to be clear; I am not suggesting that the authors have not been careful in their analysis, but I am suggesting that we should consider the broad situation and produce a specific strategic analytical

Cancer Patients Have Much to Gain From Psychiatric Treatment

Cancer Patients Have Much to Gain From Psychiatric Treatment

Hospice in a Zoologic Medicine Setting

Forty years ago, Dr. Elizabeth Kubler-Ross in her landmark book On death and dying observed "maybe at the end of our days, when we have worked and given, enjoyed ourselves and suffered, we are going back to the stage that we started out with and the circle of life is closed." Just as human life expectancy has steadily increased over the last 4 or 5 decades, animal life expectancy has increased, including that of zoologic species. With this has come a need for humans to openly and frankly deal with end-of-life issues for themselves and for their animals, including those in zoos. By necessity, zoos have been dealing with problems such as aggressive pain management and triage, and efforts to incorporate end-of-life care into zoologic medicine. But these efforts have yet to include formal acknowledgment that they are a basic form of hospice. Hospice for humans, and now for companion animals, includes much more than pain relief and geriatric care. This article reviews the concepts and basic practices of hospice and the closely related field of palliative care, their relatively recent application to companion animal care, potential applications to zoologic medicine, and the ways this could provide opportunities for personal growth of zoo visitors and staff, including veterinary staff.

A “good death”: perspectives of Muslim patients and health care providers

BACKGROUND AND OBJECTIVES:Twelve “good death” principles have been identified that apply to Westerners. This study aimed to review the TFHCOP good death perception to determine its validity for Muslim patients and health care providers, and to identify and describe other components of the Muslim good death perspective.SUBJECTS AND METHODS:Participants included 284 Muslims of both genders with different nationalities and careers. We used a 12-question questionnaire based on the 12 principles of the TFHCOP good death definition, followed by face-to-face interviews. We used descriptive statistics to analyze questionnaire responses. However, for new themes, we used a grounded theory approach with a “constant comparisons” method.RESULT:On average, each participant agreed on eight principles of the questionnaire. Dignity, privacy, spiritual and emotional support, access to hospice care, ability to issue advance directives, and to have time to say goodbye were the top priorities. Participants identified three main domains. The first domain was related to faith and belief. The second domain included some principles related to self-esteem and person>s image to friends and family. The third domain was related to satisfaction about family security after the death of the patient. Professional role distinctions were more pronounced than were gender or nationality differences.CONCLUSION:Several aspects of «good death,» as perceived by Western communities, are not recognized as being important by many Muslim patients and health care providers. Furthermore, our study introduced three novel components of good death in Muslim society.

Sexuality of individuals in the end-of-life stage

Summary This paper looks at the dying process and the reasons to include discourse on human sexuality as part of the dying process when providing psycho-educational support to patients and families. Illness and learning of one's approaching death can disrupt the sex lives of terminally ill people who wish to continue benefiting from sexuality. This study uses the five stages of death theory, popularized by Elisabeth Kubler-Ross, and explores these stages from a unique sexological perspective. A qualitative methodological approach was used in order to better understand the difficulties met by terminally ill people when dealing with their sex lives during the various end-of-life stages. Data is presented as case histories gathered in the context of sexology consultations. Clinical interviews contributed to the resolution of sexual problems faced by terminally ill people and their family caregivers. This study raises questions about the professional's responsibility regarding the issue of sexuality for individuals in the end-of-life stage, as well as how to open discussions on sexuality.

Ripeness and Grief in Conflict Analysis

In assessing the timing of a conflict resolution effort, one of the most frequently used explanatory frameworks is ripeness theory. Despite its popularity, ripeness theory has some limitations: poorly established generalization outside international situations, empirical validation is difficult to objectify, limited consideration of non-rational factors, and low predictability. The purpose of our study is to contribute to enriching ripeness theory by bringing in the theory of grief developed by Elisabeth Kubler-Ross. The anchovy fishing conflict in the Bay of Biscay (off the coast of France and Spain) lends itself to this type of analysis, as it is a conflict that has seen many reversals, making the place of resolution efforts hard to explain. It is from this perspective that grief theory is put forward as a complementary explanatory model. The model is tested using an original methodology that has the merit of being reproducible through the lexical analysis of newspaper articles. The results, confirming the grief model’s relevance, can then be proposed as an enhancement to ripeness theory by incorporating the grief model. This improvement leads to a better understanding of the issues of initiating a conflict resolution effort.

Editorial: A Tribute to Florence Wald

I believe it was around 1978 when I first met Florence Wald. I was at the University of Michigan conducting a survey of hospices in the United States and met with various leaders in the field. How could I not meet Florence Wald. Dean Wald had convened a conference at Yale in 1966 where clinicians and scholars working in end-of-life care met. Among those attending the conference were Dame Cicely Saunders, Elisabeth Kubler-Ross, Zelda Foster, Colin Murray Parkes, Ray Duff, and Ed Dobihal (Foster, 2001). This interdisciplinary meeting “provided a momentum that would shape the interdisciplinary course of hospice in America” (Foster, p. 45). Florence had engaged in a research project that was foundational to her work in the field of death and dying. “A Nurse’s Study of Care for Dying Patients” was awarded $31,209 for each of 2 years. The American Nurses Foundation provided her with an additional $4200 for her work (Wald, 1994). Mrs. Wald had left her Deanship at the Yale School of Nursing to conduct the nurse’s study together with Dr. Morris Wessel and Rev. Ed Dobihal and others exploring end-of-life care for a small group of individuals. Her pioneering work led to the establishment of Hospice, Inc. and later the Connecticut Hospice. This work was interdisciplinary and her activities are reflective of evidence-based practice. Florence Wald was a pioneer of hospice care in the United States and a charter member of the International Work Group on Death, Dying, and Bereavement. A revered member of that organization, Florence has received many honors: honorary degrees from Mt. Holyoke College and Yale University; an academic chair established at the Yale School of Nursing (YSN); and induction into the National Women’s Hall of Fame, the Connecticut Women’s Hall of Fame, and the Hall of Fame of the American Nurses Association. She was also honored as

Robin Romm. 2009. The mercy papers: A memoir of three weeks

Robin Romm. 2009. The mercy papers: A memoir of three weeks

Psychological Adaptation to Illness: A Personal Odyssey and Suggestions for Physicians

In this article, I review my personal odyssey in dealing with Hodgkin's disease over the past 8 years in an attempt to share insights on coping with illness. My purpose is to help physicians both professionally, as they interact with patients, and personally, as they face illness themselves or help a family member, colleague, or friend face illness. I then review Elisabeth Kubler-Ross's writings on adaptation to illness and discuss their implications.

On Death and Dying—Forty years later, how well are we dying?

AbstractIn the mid-1960s two doctors, one in London and the other in Chicago, set about changing the accepted medical care of dying patients. In London, Dr Cicely Saunders established St Christopher's Hospice specifically to provide compassionate care for dying patients linked to a rigorous scientific approach to relieving their unpleasant symptoms.Across the Atlantic, in a Chicago Hospital, Dr Elizabeth Kubler-Ross, a psychiatrist who became interested in the emotional issues of dying patients, arranged seminars where dying patients could talk about their feelings.The efforts of these two women led to a totally different way in which modern doctors deal with dying patients. Every medical student is now taught how to break bad news. The knowledge of how to control pain, nausea and other distressing symptoms is available to all doctors.By means of four simple stories, some of the dilemmas of dealing with dying patients in South Africa today will be explored. Forty years after Cicely Saunders and Elizabeth ...

Visiting/viewing the body of a deceased patient

Nurses have a vital role in enabling relatives and carers to visit the body of a deceased patient. Haas (2003) describes how nurses are the healthcare professionals most likely to be present at the time of death. They are in an influential position and are able to guide relatives through this unfamiliar and disturbing experience. She highlights that, instinctively, nurses may advise and support relatives to spend time with the deceased person. However, these instincts need to be supported by research-based evidence. The associated literature highlights the long-term importance that seeing a body has on the bereaved (Kubler-Ross, 1983; Raphael, 1984; Hodgkinson and Stewart, 1991; Berry and Coyle, 2006). Many writers agree that the grieving process is complicated. Worden (2003) describes how the bereaved person’s acceptance of the reality of loss is the first ‘task’ in the mourning process. This stage is necessary if bereaved people are to work through their grief. Seeing the body can help the bereaved encounter the reality of death and is perhaps the last chance to say ‘goodbye’ and hold a loved one (Raphael, 1984; Pessagno, 1997; O’Gorman, 1998; Berry and Coyle, 2006). Jones and Buttery (1981) and Davies (1997) highlight the importance of nurses explaining to friends and relatives what the deceased person will look and feel like, especially if the person has undergone physical change as a result of injury. Bereaved people’s imagination may, in many cases, be worse than the reality (Wright, 1991). In this context the needs of children can often be overlooked. Parents or guardians may aim to protect children by distancing them from the scene of death and having to witness upset adults. The British Association for Emergency Medicine and the Royal College of Nursing (1995) advise that children need special …

Palliative Care: An Historical Perspective

Palliative care began with a focus on the care of the dying. Dr. Cicely Saunders first articulated her ideas about modern hospice care in the late 1950s based on the careful observation of dying patients. She advocated that only an interdisciplinary team could relieve the “total pain” of a dying person in the context of his or her family, and the team concept is still at the core of palliative care. In the 1960s, a psychiatrist in the United States, Elisabeth Kubler-Ross, confronted fierce resistance to treating people at the end of life with respect, openness and honest communication. Her groundbreaking book, On Death and Dying, and charismatic presentations revolutionized and humanized how dying patients were acknowledged and cared for. In 1974, Dr. Balfour Mount, a surgical oncologist at The Royal Victoria Hospital of McGill University in Montreal, Canada, coined the term palliative care to avoid the negative connotations of the word hospice in French culture, and introduced Dr. Saunders’ innovations into academic teaching hospitals. He first demonstrated what it meant to provide holistic care for people with chronic or life-limiting diseases and their families who were experiencing physical, psychological, social, or spiritual distress. In 1997, the Institute of Medicine report, “Approaching Death: improving care at the end of life” (M.I. Field and C.K. Cassel, editors) documented glaring deficiencies in end-of-life care in the United States. With the support of the Robert Wood Johnson Foundation and George Soros’ Open Society Institute, a major effort to bring palliative care into mainstream medicine and nursing was launched. There were clinical demonstration projects, reviews of palliative and end-of-life care content of core textbooks, consumer awareness through Last Acts and the Bill Moyer’s Series, “On Our Own Terms” (2000), funding of palliative care faculty scholars, and an NIH State of the Science conference. Clinical Practice Guidelines for Quality Palliative Care were first released in 2004, expanding the focus of palliative care to include not just dying patients, but also patients diagnosed with life-limiting illnesses. By 2006, there were 57 palliative medicine fellowship programs with approximately 100 trainees. In 2006, the American Board of Medical Specialties (ABMS) and the Accreditation Council for Graduate Medical Education recognized the subspecialty of Hospice and Palliative Medicine. Reflecting the roots of palliative medicine in many specialty fields, the boards of 10 specialties are cosponsoring the ABMS certification examination, given for the first time in 2008, and there are over 3000 members of the American Academy of Hospice and Palliative Medicine. Palliative medicine is the continuation of the long struggle to accept life on its own terms, honestly and openly. Taking its place in academic medicine, this new subspecialty will enable future generations of physicians to gain generalist-level palliative medicine skills while advancing knowledge in the field and fulfilling our promise to patients and their families that we will not abandon them when our treatments fail and that, at all times, we will do all we can to relieve their suffering.

A Review of On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss

Book reviewed in this article:Elizabeth Kübler‐Ross and David Kessler (2005). On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss.

On-Call Radiology

On-Call Radiology

Innovations: Child & Adolescent Psychiatry Training in Developmental Responses to Trauma for Child Service Providers

Innovations: Child & Adolescent Psychiatry Training in Developmental Responses to Trauma for Child Service Providers

Innovations: Child & Adolescent Psychiatry Training in Developmental Responses to Trauma for Child Service Providers

Innovations: Child & Adolescent Psychiatry Training in Developmental Responses to Trauma for Child Service Providers