Palliative medicine
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Palliative medicine · Jun 2019
Palliative care specialists in hospice and hospital/community teams predominantly use low doses of sedative medication at the end of life for patient comfort rather than sedation: Findings from focus groups and patient records for I-CAN-CARE.
Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care. ⋯ Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.
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Palliative medicine · Jun 2019
Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.
A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. ⋯ A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
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Palliative medicine · Jun 2019
Common dedication to facilitating good dying experiences: Qualitative study of end-of-life care professionals' attitudes towards voluntary assisted dying.
Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals' role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered. ⋯ Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.
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Palliative medicine · Jun 2019
Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.
Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. ⋯ The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
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Palliative medicine · Jun 2019
The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach.
Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it. ⋯ We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.