Palliative Context Research Articles

Research participation by older adults at end of life: barriers and solutions.

The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life.

Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones' death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.

Acute ethics: Risk assessment and the Doctrine of Double Effect in a referral to on-call urology

The Doctrine of Double Effect has been described as often used in medicine and surgery but is seldom described outside the palliative medicine context. This paper presents a possible clinically focussed illustration of the doctrine of double effect used in an acute urological setting. The authors describe the case of an elderly patient with significant dementia and haematuria who required anticoagulation. Implicit double effect reasoning may have helped the surgical team reach their initial decision with regard to a treatment plan, reconciling a duty to beneficence with a duty not to cause harm. This short case is offered as a stimulus for further discussion over the role of duty-based ethical reasoning in the acute surgical setting. It also highlights a possible need for more detailed case-analysis in identifying areas of interest in surgical ethics.

Health-promoting conversations about hope and suffering with couples in palliative care

Families living with a dying relative face existential challenges which need to be met by caregivers in a dialogue. To describe couples' experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care. Data comprised semi-structured evaluative interviews with six couples. Each couple together had previously participated in three health-fostering conversations with nurses. Data were analyzed by content. Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. It gave them the opportunity to unburden themselves, as well as a way of learning and finding new strategies for managing daily life. Health-promoting conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and families in the palliative context.

Concerns about Losing Control When Breaking Bad News to Terminally Ill Patients with Cancer: Physicians' Perspective

To study and explore problems perceived by physicians when breaking bad news to advanced cancer patients about discontinuing or not offering tumor-specific treatment due to incurable cancer. A qualitative phenomenographic interview study. The county of Ostergötland in Sweden. Thirty physicians with different demographic characteristics. According to the physicians' answers breaking bad news was perceived as involving a risk of losing control in different ways, regarding emotions, oneself, confidence, professionalism and patient trust. Four different main categories described as problems were identified; perceptions focusing on existential thoughts, relationships, knowledge, and perceptions related to time and environmental disturbances. Physicians perceived that breaking bad news to dying patients with cancer involved a risk of losing control. Existential thoughts and a lack of knowledge contribute to this risk. Theoretical education in existentiality/spirituality and clinical practice in a palliative context may help maintaining control.

Application of Attachment Theory for Psychological Support in Palliative Medicine during the Terminal Phase

Background and Purpose: The situation leading to the death of a close relative is a unique and irrevocable experience of separation which evokes a state of emotional strain for the patient and the family. This situation therefore is an especially effective trigger of the so-called ‘attachment system’. Attachment research in recent decades has shown that already in early infancy every person develops special attachment strategies activated in cases whenever a person cannot cope on its own with dangers. Only four such patterns of attachment have been specified, namely ‘secure’, ‘insecure-avoidant’, ‘insecure-ambivalent/enmeshed’ and ‘disoriented/disorganized’. Since the dying are usually brought to the hospital by members of the family, the doctor responsible for treatment can perceive with unusual clarity the patterns of attachment within the family system, and can integrate such observation into her treatment strategy. This article suggests an attachment-informed therapy in the field of palliative medicine. It seems apparent that such approaches provided by the attachment theory for relief during the terminal phase are not only relevant in a palliative context but also applicable within the overall field of medicine and care-giving relating to terminal patients and their families. Methods: To the doctor familiar with the attachment patterns and the conditions of their formation, clinical observation easily reveals which pattern is active among the dying and the accompanying members of the family. Here, cases are used to show how these insights can be realized in the psychotherapeutic care of patients and their families on a palliative ward. For example, in a case of ‘avoidant’ attachment, denied emotions can be addressed carefully and still existent hopes for protection and support can be reinforced; in a case of so-called ‘ambivalent-enmeshed’ attachment, overly intense relationships can be disentangled, and in a case of ‘disorganized’ attachment, emotion regulation can be supported and clarity in the relationships can be promoted. Results: The clinical results show that psychotherapeutic intervention based on insights imparted by the attachment theory are of special benefit in relieving the psychological strain for the dying and their families.

The Contribution of “Good” Palliative Care to Quality of Life in Dying Patients: Family Members’ Perceptions

The purpose of the study was to find out which elements according to relatives’ conceptions could be considered essential for elderly patients’ good quality of life in a palliative context and to discern the most important and valuable characteristics of good palliative care. Nine relatives were theme interviewed 1 year after the patients’ deaths. The recorded tapes were analyzed by the phenomenographic method. The conceptions describing the elements needed for good quality of patients’ lives in the palliative context were categorized into three horizontal categories: way of living, dignity, and professional palliative care. Although quality of life is a complex concept and difficult to analyze, the opinions of the relatives of patients bring some relevant aspects to this discussion. Our results emphasize the importance of family in assessing and improving care in the palliative context.

Quality of life Evaluation by the eortc Questionnaire Technique in Patients with Generalized Malignant Melanoma on Chemotherapy

A longitudinal quality of life (QOL) study was performed on patients with advanced melanoma during chemotherapy. The purpose was to describe QOL in this palliative context and to compare the clinical outcome variables and patients' self-assessed QOL. QOL was assessed by the EORTC core questionnaire technique (QLQ-C36), a study-specific melanoma (MM module and the Hospital Anxiety and Depression (HAD) scale. The questionnaires displayed good psychometric qualities and the technique proved to be applicable in this longitudinal study of severely ill patients. Only six patients, out of 95 in total, complied with the full one-year study. Drop-outs occurred early in the course of treatment, most of them due to progressive disease or death. Pretreatment, patients reported a low level of dysfunction and symptom burden but 9 weeks later they exhibited significant deterioration in all QOL measurements, with the exception of pain and emotional functioning. The mean duration of response was short and there was considerable observed treatment-related toxicity. However, no correlation was found between physician-rated clinical outcome variables and QOL measurements, except for neuropathy. Our results are in accordance with earlier data on the supplementary value of QOL measurements to define endpoints in clinical trials.