RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

Download Full-text

“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Journal of Parkinson s Disease ◽

10.3233/jpd-191884 ◽

2020 ◽

Vol 10 (4) ◽

pp. 1631-1642

Author(s):

Herma Lennaerts-Kats ◽

Anne Ebenau ◽

Maxime Steppe ◽

Jenny T. van der Steen ◽

Marjan J. Meinders ◽

...

Keyword(s):

Parkinson’S Disease ◽

Palliative Care ◽

Parkinson's Disease ◽

Qualitative Study ◽

Family Caregivers ◽

Interpretative Phenomenological Analysis ◽

Healthcare Professionals ◽

Structured Interviews ◽

Practice Nurses ◽

Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

Download Full-text

Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

Palliative Medicine ◽

10.1177/0269216320963941 ◽

2020 ◽

pp. 026921632096394 ◽

Cited By ~ 1

Author(s):

Stephanie MC Ament ◽

Inge ME Couwenberg ◽

Josiane JJ Boyne ◽

Jos Kleijnen ◽

Henri EJH Stoffers ◽

...

Keyword(s):

Heart Failure ◽

Systematic Review ◽

Palliative Care ◽

Chronic Heart Failure ◽

Health Care Professionals ◽

Healthcare Professionals ◽

Care Process ◽

Care Needs ◽

Process Guidance ◽

Palliative Care Needs

Background: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. Aim: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. Design: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools’ development, evaluation, feasibility, and implementation was sought and described. Data sources: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. Results: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. Conclusion: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

Download Full-text