End-of-life care preferences of Canadian senior citizens with caregiving experience

A grounded theory study of senior citizens' preferences for end-of-life care was conducted in 1998 in Canada. Seniors who had experienced the deaths of others and who had considered their own death and dying were the target population. The sample was 49 seniors who met the study criteria. Participants provided end-of-life care in a variety of settings for 1-8 family members or friends. Two concepts identified were expected dependency while dying and appropriate end-of-life care. Almost all participants preferred to be cared for at home, yet family caregivers who could provide appropriate end-of-life care when dependent were needed for this to occur. The appropriateness of end-of-life care was contingent upon the place where end-of-life care occurred, as well as the type of care provided. Life prolongation was not desired, 53% even endorsed euthanasia as a way of bringing about the inevitable end to life.     

End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences

Background

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

Methods

The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

Results

Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

Conclusion

End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.     

Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Belgian General Practitioners' Perspectives on the Use of Palliative Sedation in End-of-Life Home Care: A Qualitative Study

ContextPalliative sedation (PS) is a far-reaching palliative measure with a life-shortening potential. Guidelines provide only for a restricted use of PS and as a last resort.ObjectivesTo explore PS practice in end-of-life (EoL) home care.MethodsThis was a qualitative analysis of semi-structured interviews with 52 general practitioners (GPs) of Flanders, Belgium.ResultsApart from GPs who adhere to the existing prerequisites for PS, opinions diverge among GPs on the indication area for PS and on possible life-shortening intentions. The key to GPs' broadened view on “which suffering merits PS” is the fragile context of EoL home care, and the key to GPs' possible life-shortening intentions is their need to facilitate the dying process, when trying or lengthy. When honoring a terminally ill patient's request for euthanasia, several GPs prefer slow euthanasia using PS to a lethal injection.ConclusionPS home practice deviates from the PS guidelines' recommendations. In addition to the GPs' shortage of knowledge, the guidelines' recommendations do not always meet the particular needs of EoL home care. If one consideration of EoL home care is to respect a patient's wish to die at home, then the pre-emptive use of PS to avoid a futile transfer to the hospital in the case of an undesirable turn of events deserves more attention in the PS debate.     

Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea

Goals of work This study examined cancer patient and family member preferences—and the reasons for the preferences—regarding place of terminal care and of death.Patients and methods We constructed a questionnaire that included demographic, clinical, and support network data for 371 patients who were treated at any of the seven university hospitals or the National Cancer Center in Korea and 281 of their family members.Main results About half of the interviewed patients and half of the family members expressed a preference for the patient being cared for and dying at home. The preference reflected a wish for patients to live out their lives in privacy and to be with their family when their life ended. Those who expressed a preference to be cared for or to die in a hospital wanted to get medical treatment during the last days of life and to relieve their families of the burden of caring for them. Of the variables examined, support network factors and some sociodemographic factors (sex, family members age, and place of residence) were strongly predictive of preferences.Conclusion A majority of cancer patients preferred to receive terminal care at home. Cancer patients and family members with strong support groups were more likely to prefer the home as the place of terminal care and dying. Hence, improving support networks might increase the proportion of patients receiving home care and dying at home.     

Exploring the components of the quality of death in Japanese emergency departments: A qualitative study

BackgroundThe need to care for patients who die in the emergency department is increasing in Japan, and emergency nurses are required to provide end-of-life care to ensure that patients experience a good death. However, the components of the quality of death and what constitutes a good death for patients dying in the emergency department are unclear.AimThis study aimed to explore the components of the quality of death for patients who die in emergency departments of Japanese hospitals.MethodsThis study employed a qualitative design. An inductive content analysis was conducted based on semi-structured interviews with 26 participants, which included 15 emergency nurses, five emergency physicians, and six bereaved families.ResultsSeven components of quality of death were identified: (1) transition to the end-of-life phase after receiving the best treatment, (2) dying without suffering, (3) having the patient's wishes respected, (4) having a loved one nearby, (5) maintaining human dignity, (6) having no change in appearance, and (7) not making the family feel guilty.ConclusionThese components suggested that emergency nurses should: support patients' receipt of the best treatment and foster their smooth transition to the end-of-life phase at the appropriate time, ensure that the patients in the end-of-life phase spend time with their loved ones immediately before their death, enable the maintenance of human dignity and patient identity of end-of-life patients, and make sure that the families of end-of-life patients do not feel guilt.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto,Canada

PurposeThe purpose of this study was to describe and examine how meanings of home condition negotiations of care for Chinese immigrants with advanced cancer receiving palliative home care in Toronto, Canada.MethodThis focused ethnographic study drew on the tenets of postcolonial theory to examine the social and material circumstances associated with dying at home for Chinese immigrants. Eleven key informants were recruited, in addition to 4 cases comprised of a Chinese immigrant care recipient, primary family caregiver, and home visiting nurse. Individual, open-ended interviews were conducted with each participant, along with observations of home visits.ResultsPalliative care was not viewed strictly as an intrusion that was thrust upon the home without permission or invitation, but an insertion into the routines of the home that was necessary because care recipients recognized the need for palliative care providers to help navigate the system and negotiate dying at home. Consequently, care recipients and family caregivers also sought to minimize the intrusions of palliative care by preserving everyday routines and engaging with family and friends.ConclusionsAlthough the study was focused on Chinese immigrants, the findings resonate with and speak more broadly to the contextual, systemic, social, and material circumstances associated with dying at home for immigrants with advanced cancer. Nurses providing palliative home care to immigrants may begin to critically examine assumptions of “cultural” beliefs about cancer and end-of-life care and look beyond identifying ethno-specific practices, but come to recognize how nurses are implicated in a culture of palliative care.     

The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the brussels metropolitan region

Context

There is some consensus that a “good death” is one which occurs at home, in the presence of loved ones, and is free of distress. Involvement of palliative care services is assumed to improve these circumstances.

Objectives

This population-based study describes characteristics of the end of life of patients dying in Brussels and examines their associations with the involvement of palliative care services.

Methods

In 2007, an anonymous large-scale mortality follow-back survey was conducted in Brussels by mailing questionnaires regarding end-of-life care and characteristics to the attending physicians of a representative sample of 1961 deaths.

Results

Response rate was 41% (n = 701). Of all deaths, 59% were nonsudden. Of these, 12% took place at home. For 27%, the attending physician was informed about the patient’s preferred place of death. When the preference to die at home was known, 66% died at home. At the moment of death, in 47% of nonsudden deaths, loved ones were present. In a quarter of deaths, palliative care services were involved. Involvement with palliative care services was more likely for cancer patients than noncancer patients and was associated with the attending physicians more often being informed about the preferred place of death, with patients more often dying at home, with loved ones more often being present, and with a better feeling of well-being on the last day.

Conclusion

Overall, circumstances at the very end of life are suboptimal in Brussels. This study provides a case for stronger involvement of palliative care as a focal point for policies to improve end-of-life circumstances in a metropolitan area such as Brussels.     

Hospice care delivered at home, in nursing homes and in dedicated hospice facilities: A systematic review of quantitative and qualitative evidence

Background

Hospice care supports patients and their families physically and emotionally through the dying phase. In many countries a substantial portion of specialised end-of-life care is provided through hospices. Such care has developed outside of general healthcare and is commonly provided in a patient's home or in dedicated facilities. Hospice provision may need to increase in the future due to an ageing population with a greater need for access to end-of-life care.

Objectives

In this systematic review we sought to identify the current evidence on (1) the effectiveness, including cost-effectiveness, of hospices, and hospice care in a patient's home and in nursing homes and (2) the experiences of those who use and of those who provide such services.

Methods

We included quantitative and qualitative studies on hospice care that was provided in a patient's home, nursing home or hospice. We did not include studies on end-of-life care that was provided as part of general healthcare provision, such as by general practitioners in primary care, community nurses or within general hospitals. For quantitative evaluations we included only those that compared hospice care with usual generalist healthcare.The databases CINAHL, MEDLINE, EMBASE, and The Cochrane Library were searched from 2003 to 2009. Evidence was assessed for quality and data extractions double-checked. For quantitative studies we present the outcome data comparing hospice versus usual care. For qualitative evaluations we organise findings thematically.

Findings

Eighteen comparative evaluations and four thematic papers were identified. Quantitative evidence, mostly of limited quality in design, showed that hospice care at home reduced general health care use and increased family and patient satisfaction with care. Main themes in the qualitative literature revealed that home hospice services support families to sustain patient care at home and hospice day care services generate for the patient a renewed sense of meaning and purpose.

Conclusions

Although studies had methodological limitations, in this review we found much evidence to support the benefits of hospice care. There were limited evaluations found on the impact of hospice care on psychological well-being, such as symptoms of depression, and on inpatient hospice care and non-hospital related costs.     

Meanings of dying at home for Chinese patients in Taiwan with terminal cancer: a literature review

To maintain dignity, patients with terminal cancer must be able to do things in their own way, to make their own decisions, and to preside over their own dying. Among the tasks considered essential for patients with terminal cancer is deciding where they prefer to die. The actual place of death has been recognized in hospice care as indicating quality of care. Approximately two-thirds of patients with cancer, when asked about the preferred place of death, say they wish to die in their own homes. Patients with terminal cancer dying at home may find physical and emotional comfort there. Home is a place where people may feel safety and a sense of belonging. In dying at home, patients with terminal cancer also may have a greater chance to control their environment, more autonomy and privacy, and a sense of normality. In this article, special cultural meaning of dying at home for the Chinese patient and the family is reviewed. It is essential for health care professionals to understand Chinese cultural beliefs and values related to dying at home in order to provide culturally sensitive care for Chinese dying patients and their families and to enhance their sense of control over the unknown process of dying.     

Attitudes of the General Public,Cancer Patients,Family Caregivers,and Physicians Toward Advance Care Planning: A Nationwide Survey Before the Enforcement of the Life-Sustaining Treatment Decision-Making Act

Context

To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically.

The end of life: informal care for dying older people and its relationship to place of death

OBJECTIVE: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. METHODS: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. RESULTS: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death. CONCLUSIONS: Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.     

The experience of family caregivers caring for a terminal patient at home: A research review

IntroductionOne of the key aspects of the care of terminal patients is care delivered in their own home. Increasingly, the process of dying is moving from hospitals to homes. Although this process is directly related to the support of the social health environment, the involvement of family caregivers is essential. Given the impact that caring for a terminally ill family member has on people’s lives, it is necessary to comprehend their personal experience in a holistic way.ObjectiveTo reveal the experience of family caregivers who are caring for a terminal patient in their home.DesignA qualitative systematic review of articles published from 2000 to 2015 was conducted between March and September of 2015. The following databases were consulted: CINAHL, PubMed, PsycINFO, Cochrane Library, SciELO and Dialnet. After applying the selection criteria, 12 relevant studies were identified. Subsequently, two of the reviewers jointly performed a qualitative content analysis of them.ResultsThe analysis permitted the caregivers’ experiences to be grouped into five themes: 1) Learning the diagnosis: uncertainty about the future and the prospects of death; 2) Feeling the physical and emotional burden of care; 3) Experiencing a limited life; 4) Redefining the relationship with the person being cared for; and 5) Valuing the importance of the support of the environment.ConclusionsThis review shows that caring for a family member with advanced illness in the home has a great impact on the personal realm of the caregiver and in the relationship he or she maintains with the ill family member. Being involved in the process of dying translates into a prodigious physical and psychological effort, together with a substantial limitation on the normal development of their own life. Additionally, the caregiver must face and establish a new relationship with the family member, in accordance with the new ethos, without the help of a formal structure providing the necessary support. These results may help to focus attention on family caregiver needs and to develop the knowledge necessary to meet the current demands of end-of-life health care in the home.     

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.     

Family involvement in end-of-life care in a paediatric intensive care unit

End-of-life care (ELC) on a paediatric intensive care unit (PICU) is a fundamental aspect of clinical practice and yet often remains a highly emotive and challenging issue. Every year, many children die in PICU often following the withdrawal of life-sustaining treatment, and as health professionals we have a duty to provide ELC that meets the needs of the dying child and their family. To achieve this, there is a growing emphasis on incorporating parental views on withdrawal of intensive care especially in time and place. Home care of the dying child enables the child to die at home in familiar surroundings and with the people who love them the most. This service is essentially child centred and acknowledges the unique and pivotal position that parents have in their child's life by empowering them to have control over the time and place of death. This is a vitally important aspect of end-of-life in PICU and underpins the ethos of this area of practice. We present a series of case reviews of patients cared for within a 12-month period, where intensive care was withdrawn distant from the PICU environment and address the challenges and considerations surrounding this area of practice.     

Prevalence and Characteristics of Patients Being at Risk of Deteriorating and Dying in Primary Care

Context

Understanding the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying may allow general practitioners (GPs) to identify them and initiate end-of-life discussions.