Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION:  Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.

Questioning the value of present life: The lived experience of older people who see no future for themselves.

OBJECTIVES: To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die. METHODS: Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device. RESULTS: Four intertwined constituents together with the essence of the phenomenon provide a layered description of what it means to see no future for oneself. In all constituents: 1) not sharing everyday life, 2) looking for new commitments, 3) facing present losses and future fears and 4) imagining not waking up in the morning, the essence losing zest for life seeped through their daily experiences. CONCLUSIONS: As their horizon of future possibilities is shrinking, older people in our study experience a loss of zest for life and start to questioning the value of their present lives. And although a certain languishing mood can be discovered, the phenomenon 'seeing no future for oneself' does not entail a wish to die.

Dealing with requests for euthanasia in incompetent patients with dementia. Qualitative research revealing underexposed aspects of the societal debate.

OBJECTIVES: In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. METHODS: Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. RESULTS: Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. CONCLUSIONS: Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication.

[Physician-assisted dying at home in the Netherlands: what do general practitioners face? An qualitative interview study]. / Euthanasie in de thuissituatie.

OBJECTIVE: To explore what Dutch general practitioners (GPs) need and what their felt responsibilities and considerations are during (decision-making for) physician assisted dying (PAD) in the context of palliative care in the home-setting. DESIGN: A qualitative interview study was performed as part of a larger interview-study exploring the experiences of patients, relatives, and other care-professionals with PAD. METHOD: Purposive sampling was adopted to select eleven GPs with experience in end-of-life decision-making and with sufficient variety on the domains of age, gender, work setting and additional expertise. Narrative interviews were conducted by a GP-researcher. Interviews were transcribed, anonymized and analyzed through narrative thematic analysis. A member check with participants was performed. RESULTS: GPs mentioned corresponding needs on the personal level, in the interaction with patients and families, and on an organizational/societal level. Similar examples of complicating family-dynamics were described. Meanwhile, different considerations emerged in relation to how to act and what to take responsibility for during PAD, such as GPs' own life views, sort/duration of treatment relationships, and care for relatives. Last, casuistry of PAD-requests of patients with metastasized cancer emerged - in theory the least controversial cases - in which specific circumstances made GPs again (re)consider their responsibilities and boundaries. CONCLUSION: This study provides new insight into what matters for Dutch GPs while trying to realize 'good euthanasia-care' in the home-setting. The study raises important questions about the position of GPs, the conditions under which they need to operate, and what reasonably may be expected of them.

Inner posture as aspect of global meaning in healthcare: a conceptual analysis.

Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated 'inner posture' as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer's notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions.

Till Death Do Us Part: The Lived Experience of an Elderly Couple Who Chose to End Their Lives by Spousal Self-euthanasia.

PURPOSE: This article provides the first qualitative account of spousal self-euthanasia in older people, a previously unexplored phenomenon. It investigates the lived experience of a Dutch elderly couple who strongly wished-and chose-to die together at a self-directed moment, despite not suffering from a life-threatening disease or severe depression. It describes their subjective experiences and considerations prior to their self-chosen death. METHODS: The case study focuses on the particular experience of one elderly couple (aged above 70) by presenting two personal accounts from an insider perspective. These were analyzed using a thematic existential phenomenological method. RESULTS: Spousal self-euthanasia-which in the literature is associated with self-deliverance, self-determination, and a reasonable wish to die-is presented here as related to alienation from one's body and identity, the growing emptiness of life due to loss of activities, and an inability to reconcile oneself with one's changed "being-in-the-world." Their decision to end life is largely based on the anticipatory fear of further deterioration, further losing control, and not being able to control time and manner of death in the future. The couple's agreement to end their lives together, however, held both in an impasse, as their concerns, sense of time and logic differed significantly. In this case, a close relation between having a death wish and severe depression is questioned. IMPLICATIONS: This article concludes by outlining the practical implications for professionals working in gerontology and recommends further research on the relation between self-euthanasia and depression in elderly people.

Global meaning in people with spinal cord injury: Content and changes.

BACKGROUND: After spinal cord injury (SCI), people are confronted with abrupt discontinuity in almost all areas of life, leading to questions on how to live a meaningful life again. Global meaning refers to basic ideas and goals that guide people in giving meaning to their lives, in specific situations. Little is known about global meaning relating to SCI and whether global meaning changes after SCI. PURPOSE: The purpose of this study was twofold: (i) to explore the content of global meaning of people with SCI, and (ii) to explore whether or not global meaning changes after SCI. METHODS: In-depth semi-structured interviews were conducted with 16 people with SCI. Interviews were analyzed according to the method of grounded theory. RESULTS: (i) Five aspects of global meaning were found: core values, relationships, worldview, identity and inner posture. (ii) Overall, little change in the content of global meaning was found after SCI; specific aspects of global meaning were foregrounded after SCI. CONCLUSION: Five aspects of global meaning were found in people with SCI. Global meaning seems hardly subject to change.

Ethical dilemmas in elderly cancer patients: a perspective from the ethics of care.

In this article the authors have introduced specific characteristics of the increasingly large group of elderly cancer patients. They have argued that in order to provide good care we should extend our ethical awareness from issues of decision-making to a broader perspective focusing on the care relationship as developed by ethics of care principles. Cases like Mr. Michelson's and Mrs Johnson's show to what extent contemporary medicine is inclined to pursue its own goals of trying to do well, however taking the care receiver's perspective into account too little. An ethics of care approach may help to be more attentive and responsive to the patient's perspective. In the case of elderly cancer patients, being attentive and responsive to the patient's perspective seems to be a major precondition for delivering good quality care attuned to the need, perspective, and vulnerable position of patients.

Dealing with delicate issues in continuous deep sedation. Varying practices among Dutch medical specialists, general practitioners, and nursing home physicians.

BACKGROUND: This article examines delicate issues in continuous deep sedation (CDS) from the perspectives of different types of physicians. The following sensitive issues involved in CDS were investigated: artificial hydration, sedation for nonphysical discomfort, the relationship between CDS and euthanasia, and patient involvement in decision making for CDS. METHODS: A structured retrospective questionnaire concerning the most recent case of CDS during the past 12 months was sent to a sample of medical specialists (n = 727), general practitioners (n = 626), and nursing home physicians (n = 111). RESULTS: Response rates were 26.4% for medical specialists, 37.4% for general practitioners, and 59.5% for nursing home physicians. Indications for CDS differed among the types of physicians. General practitioners (25.0%) were most often confronted with a patient request for euthanasia before starting CDS compared with medical specialists (8.9%) and nursing home physicians (6.5%). A decision to forgo artificial hydration in CDS was more often made by nursing home physicians (91.3%) compared with medical specialists (53.7%) and general practitioners (51.2%). Shorter survival was found for patients sedated for nonphysical discomfort (vs other patients) by general practitioners. Among all patients, 74.5% were involved in decision making before the start of CDS. CONCLUSIONS: The present study demonstrates notable differences in CDS practice among various types of physicians. To what extent this is related to different patient populations or to different expertise requires further investigation. The use of CDS for nonphysical discomfort calls for critical examination to avoid ambiguous practice.