Technology and “natural death”: A study of older people

This paper reports a qualitative study in which the aim was to examine older peoples' beliefs and risk perceptions regarding the use of innovative health technologies in end-of-life care and to relate these beliefs to their ideas about 'natural death'. Pictures, story boards and media extracts were used during interviews and focus groups, and the research team was assisted by an advisory group which included participants. Seventy-seven older people from three age cohorts (65-74; 75-84; 85 years and over) and from three contrasting areas of Sheffield, UK took part. Key messages are for the need to ensure that 'life prolonging' and 'basic care' technologies are provided in ways that respect a variety of understandings about love, comfort, obligation and burden during dying. The study highlights: the role that older people have in caring for the dying and their needs for support and training; information needs about issues of ethics, clinical practice and advance care planning; and the willingness of older research participants to discuss these matters and to enjoy the process of so doing. Developing a programme of public education and information was identified as an issue which should be addressed urgently if older people and their family carers are to be better equipped to make informed choices about these aspects of care. The study draws together issues previously considered under the largely separate remits of palliative care and gerontology. It is being used to provide advice on palliative and end-of-life care, especially to nursing and medical practitioners and to voluntary sector organisations as they begin to assess the need for action in this field.     

The Oldest Old in the Last Year of Life: Population-Based Findings from Cambridge City over-75s Cohort Study Participants Aged 85 and Older at Death

OBJECTIVES: To characterize people of advanced old age in their last year of life and compare those dying in their late 80s with those dying aged 90 and older to inform policy and planning.
DESIGN: Retrospective analysis of prospectively collected population-based data from the Cambridge City over-75s Cohort (CC75C) Study, United Kingdom.
PARTICIPANTS: Men and women aged 85 and older at death who died less than 1 year after taking part in any CC75C survey (N=321).
MEASUREMENTS: Physical health, functional disability, self-rated health, cognitive status.
RESULTS: Functional and cognitive impairments were markedly higher for those who died aged 90 and older— predominantly women—than for those who died aged 85 to 89. At least half (49.4–93.6%) of subjects aged 90 and older needed maximum assistance in virtually every daily activity; those aged 85 to 89 needed this only for shopping and laundry. Disability in basic and instrumental activities rose from 59.1% before to 85.4% after the age of 90 and cognitive impairment (Mini-Mental State Examination score ≤21) from 41.7% to 69.4%. Despite this and proximity to death, 60.5% and 67.0%, respectively, rated their health positively. Only one in five reported needing more help.
CONCLUSION: This study provides new data identifying high levels of physical and cognitive disability in very old people in the year before death. As the very old population rises, so will support needs for people dying in extreme old age. The mismatch between health perceptions and functional limitations suggests that these vulnerable older adults may not seek help from which they could benefit. These findings have major policy and planning implications for end-of-life care for the oldest old.     

Managing Implantable Cardioverter-Defibrillators at End-of-Life: Practical Challenges and Care Considerations

Implantable cardioverter-defibrillators (ICDs) monitor for and terminate malignant arrhythmias. Given their potential as a life-saving therapy, an increasing number of people receive an ICD every year, and a growing number are currently living with ICDs. However, cardiopulmonary arrest serves as the final common pathway of natural death, and the appropriate management of an ICD near the end-of-life is crucial to ensure that a patient's death is not marked by further suffering due to ICD shocks. The tenets of palliative care at the end-of-life include addressing any medical intervention that may preclude dying with dignity; thus, management of ICDs during this phase is necessary. Internists are at the forefront of discussions about end-of-life care, and are likely to find discussions about ICD care at the end-of-life particularly challenging. The present review addresses issues pertaining to ICDs near the end of a patient's life and their potential impact on dying patients and their families. A multidisciplinary, patient-centered approach can ensure that patients receive the maximum benefit from ICDs, without any unintended pain or suffering.     

Health care consumption and place of death among old people with public home care or in special accommodation in their last year of life

BACKGROUND AND AIMS: Developing care for older people in the last phase of life requires knowledge about the type and extent of care and factors associated with the place of death. The aim of this study was to examine age, living conditions, dependency, care and service among old people during their last year of life, but also their place of death and factors predicting it. METHODS: The sample (n=1198) was drawn from the care and services part of the Swedish National Study on Ageing and Care (SNAC). Criteria for inclusion were being 75+ years, dying in 2001-2004, and having public care and services at home or in special accommodation. RESULTS: In the last year of life, 82% of persons living at home and 51% living in special accommodation were hospitalized; median stays were 10 and 6.7 days respectively. Those living at home were younger and less dependent in ADL than those living in special accommodation. Those living at home and those having several hospital stays more often died in hospital. In the total sample, more visits to physicians in outpatient care predicted dying in hospital, whereas living in special accommodation and PADL dependency predicted dying outside hospital. CONCLUSIONS: Old people in their last year of life consumed a considerable amount of both municipal care and outpatient and in-hospital medical care, especially those living at home, which in several cases ended with death in hospital.     

Living wills and end-of-life care of older people suffering from cardiovascular diseases: A ten-year follow-up

BackgroundLiving will (LW) documents have been suggested to act in patients’ best interests in end-of-life care. It is unclear, however, whether the LWs influence medical decisions when death is impending.AimTo explore, whether a LW among the community-dwelling older people has an influence on intensity of end-of-life treatment, place of death, or length of the dying process.DesignA 10-year follow-up; data concerning place and cause of death, event history, intensity of care, decision-making process, and length of the dying process were collected from the death certificates.Setting/ParticipantsIn a community-based longitudinal cardiovascular prevention trial (DEBATE) in Helsinki, home-dwelling older people with an atherosclerotic disease (n = 378, mean age 80.2 years) were questioned about the pre-existence of a written LW at baseline (n = 44) in 2000. In 2010, all death certificates (n = 207) were analysed, comparing people with a LW (n = 30) at baseline with those without (n = 177).ResultsOf the deceased, 77% died in hospital. Intensity of end-of-life treatment or cause of death did not differ between the groups. However, dying at home was more common among persons with a LW at baseline (16.7% vs. 5.6%, P = 0.031), and length of the dying process was shorter in this group (< 1 week in 50.0% vs. 27.1%, P = 0.013).ConclusionsLength of the dying process was often shorter and home death more common among those with a LW at the beginning of the follow-up. More insight into the dying process is required to ensure that the decision-making process better accommodates the preferences of older people.     

Place of death and associated gender difference in Korea 2006–2014: Evidence from exit interviews of the Korean Longitudinal Study of Ageing

Previous research has revealed that many people wish to die at home; however, most die in healthcare institutions. This study explored factors related to the place of death and gender differences in this regard among older adults in South Korea. Participants included older adults from the Korean Longitudinal Study of Ageing. Multinomial logistic regression was used to examine relationships between place of death and relevant factors. Most older adults died in hospitals, followed by at home and in assisted living residences. Hospital and assisted living residence deaths increased while home deaths decreased. In both men and women, higher daily living dependency increased the probability of dying in an assisted living residence. Women were more likely to die in assisted living residences than men, and for persons living in urban areas, there was a decreased likelihood of home death only in women. Findings support that end-of-life care is performed mostly by institutions in Korea and there are gendered patterns. To achieve aging in place, the place of death and community-based terminal care should be more considered when implementing long-term care policies.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Age-related differences in care receipt and symptom experience of elderly cancer patients dying at home: Lessons from the DEATH project

Background:   Data on the differences between older and younger elderly cancer patients dying at home is sparse. To clarify age-related differences in symptom experience and care receipt of elderly cancer patients at end-of-life, we conducted a subanalysis study of the Dying Elderly at Home (DEATH) project, a multicenter study of 240 elderly aged 65 and older dying at home.
Methods:   We assessed the frequency of symptom experience and end-of-life care receipt in home elderly patients during the last 2 days of their lives and evaluated the differences between younger elderly (aged 65–74) and older elderly (aged 75+) cancer decedents. The general practitioners were asked to fill out a questionnaire immediately after the death of study patients. A total of 66 younger and 51 older elderly cancer decedents were included in the analysis.
Results:   Coma and dementia were common among younger and older elderly patients. Older decedents were less likely to experience anxiety, but, after adjustment for baseline characteristics, this age-related difference did not clearly appear. Older decedents were also less likely to receive opioids than younger decedents. There were no significant differences in volume of i.v. hydration between the two groups.
Conclusions:   Our results suggested that there were no differences in symptom experience and care receipt among older and younger decedents, except in opioid use, at end-of-life. These findings imply a similar need of end-of-life care for younger and older elderly cancer patients who opt for home death.     

Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death

BACKGROUND: Efforts to improve communication between physicians and dying patients have been unsuccessful, and guidelines for improving patient-physician communication about end-of-life care are based primarily on expert opinion. This study assessed which aspects of communication between patients and physicians are important in end-of-life care. METHODS: Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care professionals from hospice or acute care settings, and physicians with expertise in end-of-life care. Focus group analyses determined domains of physician skill at end-of-life care. Communication with patients was identified as one of the most important domains. Analyses of components important in communicating with dying patients and their families were performed. RESULTS: The following 6 areas were of central importance in communicating with dying patients: talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death. Within these components, subthemes emerged that provide guidelines for physicians and educators. Dying patients also identified the need to achieve a balance between being honest and straightforward and not discouraging hope. CONCLUSIONS: Several areas emerged for physicians to focus their attention on when communicating with dying patients. These findings provide guidance in how to improve this communication. They also highlight the need to approach communication about end-of-life care as a spectrum that requires attention from the time of a terminal diagnosis through death.     

In Search of the Everyday Life of Older People in Japan: Reflections Based on Scholarly Literature

The main objective of this paper is to critically examine discourses about old age in Japan, a country with perspectives that are culturally different from the European and American perspectives that tend to dominate the scholarly discourse on ageing. We focus our inquiry on the scientific discourse as representative of a system of knowledge that has a crucial role in determining ways of thinking and perceiving old age. Our literature review is based on a study of academic articles, within the field of gerontology, about the everyday life of older people in Japan that were published in the 10-year period between 1999 and 2009. We apply a Foucauldian gerontology perspective as our analytical tool. The results of our study indicate that there is insufficient knowledge about the everyday life of older people in Japan in gerontological research. We identify a number of discursive practices applied in various research projects that present a one-sided story of old age in Japan. In the conclusion of this paper, we identify a need for interdisciplinary and qualitative studies of old age in Japan that would include voices of older people.     

Physical health correlates of attitudes toward aging in the elderly

Attitudes toward aging were assessed in three groups of elderly men (age 65-85), including: hospitalized veterans, veteran outpatients, and a group of non-hospitalized "healthy" veteran volunteers, using the Rosencranz and McNevin Semantic Differential Scale. Social objects rated included an "old man", a "young man", and the participant, himself, ("self"). Attitudes toward "old men" were significantly more negative than attitudes toward "young men" in all three groups. In addition, significant group by "object-rated" interactions were obtained on the autonomous/dependent and instrumental/ineffective dimensions of this scale. These interactions were attributable to a more negative "self" rating by the hospitalized group. These results suggest that within the population studied, older persons in poor health tend to view themselves more like the stereotyped "old person" than do healthy old people, who tend to perceive themselves as being more like a "young person".     

The quality of dying and death

During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time, there has been a call to clarify the distinctions between quality of dying and death and other end-of-life constructs. The purposes of this article are to (1) review research that examined definitions and conceptualizations of the quality of dying and death, (2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life, and (3) outline challenges that remain for health care professionals, researchers, and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with 7 broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. The quality of dying and death is subjectively determined with numerous factors that influence its judgment, including culture, type and stage of disease, and social and professional role in the dying experience. Quality of dying and death is broader in scope than either quality of life at the end of life or quality of care at the end of life, although there is overlap among these constructs.     

Comfort for the dying: five year retrospective and one year prospective studies of end of life experiences

Many cultures have reported end-of-life experiences (ELEs) as part of the dying process. However, few studies have examined the mental states of the dying in the weeks and days before death. Following an ELE pilot study with a palliative care team, 38 nurses, doctors and end-of-life carers from two hospices and a nursing home took part in a 5-year retrospective followed by a 1-year prospective ELE study. Interviewees’ reports (first-hand and second-hand accounts from relatives, patients and residents) suggested that ELEs are not uncommon. ELEs included deathbed phenomena (DBP) such as visions, coincidences and the desire to reconcile with estranged family members. These experiences seemed to comfort both the dying and the bereaved. Interviewees described other phenomena such as clocks stopping synchronistically at the time of death, shapes leaving the body, light surrounding the body and strange animal behavior. Interviewees confirmed that ELEs differed from drug-induced hallucinations and occurred in clear consciousness. Most expressed concern about a lack of specialist ELE training and education and recommended that ELE modules be included in their training courses. ELEs provided comfort and hope for the dying and consolation for the bereaved. Further research is required to find the true prevalence and range of ELE phenomena.     

Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001

Empirical data on the rate of euthanasia, physician-assisted suicide, and other end-of-life decisions have greatly contributed to the debate about the role of such practices in modern health care. In the Netherlands, the continuing debate about whether and when physician-assisted dying is acceptable seems to be resulting in a gradual stabilisation of end-of-life practices. We replicated interview and death-certificate studies done in 1990 and 1995 to investigate whether end-of-life practices had altered between 1995 and 2001. Since 1995, the demand for physician-assisted death has not risen among patients and physicians, who seem to have become somewhat more reluctant in their attitude towards this practice.     

Quality of dying in the ICU: ratings by family members

STUDY OBJECTIVES: To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU. DESIGN: Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument. SETTING: Four ICUs affiliated with a university and a Veterans Affairs Medical Center. PARTICIPANTS: Ninety-four family members of 38 ICU decedents. MEASUREMENTS AND RESULTS: We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 +/- 14 (on a scale of 0 to 100) [mean +/- SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a "preparation for death" aspect of the dying experience--feeling at peace with dying (r = 0.69, p < 0.001), and a "whole-person concern"--keeping one's dignity and self-respect (r = 0.50, p < 0.001). CONCLUSIONS: After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.     

Making decisions about simple interventions: older people's use of walking aids

BACKGROUND: Walking difficulty is common in old age. Simple and inexpensive interventions, such as walking aids, provide considerable assistance. However, older people's views on walking aids are likely to affect their uptake, and we have little knowledge about older people's motivations for using walking aids. AIM: To explore older people's views on their use of walking aids. METHODS: Longitudinal qualitative study comprising in-depth interviews with a purposive sample of 24 men and women recruited from a UK national cross-sectional population survey of older people. Participants were 69-90 years old at the first interview, 15 were followed up a year later, and 12 were followed up again a year after that. Analysis was conducted using constant comparison methods. RESULTS: Of the 24 people interviewed at the start of the study, 12 used walking aids, mainly walking sticks. These aids came from a range of sources, including informal ones. Over the course of the study, some participants adopted walking aids or changed the types of aids that they used. As time passed, participants' initial misgivings about the use of aids subsided, and walking aids were described as improving confidence and facilitating activity and participation. Decisions to start using walking aids were influenced by both gradual and sudden changes in ability and by culturally informed views about ageing. Views on ageing initially acted as barriers to the use of aids but then acted as facilitators to use. CONCLUSIONS: Walking aids enable continued activity and participation and it is likely that they provide benefits of health and well being. Health care providers can draw on the knowledge about the impact of beliefs about ageing to help them reach shared decisions with older patients about the use of walking aids.