An integrated respiratory and palliative care service for people with advanced lung disease: Patient, caregiver and general practitioner perspectives

An integrated respiratory and palliative care service for people with advanced lung disease: Patient, caregiver and general practitioner perspectives

An article written by Dr Julie McDonald, St Vincent’s Hospital Melbourne

People with advanced chronic respiratory disease have a higher symptom burden, and poorer quality of life, than people with advanced lung cancer. Palliative care referral is recommended for people with advanced lung disease early in the course of their disease, rather than being reserved for terminal care. However, referrals to specialist palliative care remain low, as physicians remain uncertain as to the timing of palliative care referral. Providing palliative care within specialist respiratory clinics can overcome barriers to accessing palliative care, as this model of 'integrated' care provides palliative care hand-in-hand with routine disease-orientated management.

St Vincent’s Hospital Melbourne’s integrated respiratory and palliative care service has recently been evaluated. Use of the service has led to a substantial decrease in acute hospital admissions with associated hospital cost savings, and prevalent advance care planning discussions. [1]

Qualitative interviews were undertaken to further evaluate the service from a consumer perspective. A total of ten patients, eight caregivers and five general practitioners were interviewed, to understand which components of this newly developed service were considered valued and effective. [2] Qualitative analysis revealed a central theme and four subthemes, in which consumers described their experience of the service.

The central theme was the consistent description of how consumers valued the three core components of integrated care provided at each physician review: disease-orientated care, symptom management, and discussions about future care. Participants illustrated the holistic and comprehensive nature of the reviews as ‘everything we needed to discuss, we did’, with ‘no stone unturned’.

The four subthemes included: Valuing communication and engagement between patient, caregiver and healthcare professionals; the delivery of person-centred care; the usefulness, but limitations of action plan use in serious illness; and the divergent preferences for discussions about future care.

Valuing communication and engagement

Participants valued communication that 'bridge[d] the gap' between hospital and community, and spoke of 'growing this plan together'. General practitioners described 'thoughtful and detailed' communication, which allowed each team member to 'easily able to reinforce the key messages'.

The delivery of person-centred care

Patients reported that physicians 'actually listen, and you're not treated like a number'. Caregivers described physicians as 'holistic in [their] approach, and very understanding of [patient's] situation'. General practitioners echoed that management was 'in sync with [patient's] personality’ with ‘a lot of attention paid to [their] personal trajectory’.

The usefulness but limitations of action plans in serious illness

Action plans were personalised self-management plans, tailored to manage disease deteriorations or symptoms such as breathlessness, and were a key component of physician reviews. Many patients and caregivers found the written action plans ‘simple to understand and to follow’, and reported how much the plans helped them: ‘previously I couldn’t even get to the toilet’. However, others interviewed described the limits of the action plans when they were seriously unwell, illustrating the plans were ‘great in theory but when you’re not well to administer it, that’s the difficult bit’.

The divergent preferences for discussion about future care

For patients, there was a clear divergence in preferences regarding discussions about future care into two groups. Some patients were quite open about discussing the future or had their plans 'all in place'. A second group of patients described themselves as not ‘at that point yet’ to discuss the future, or felt the subject was ‘better left alone’. In contrast, caregivers were consistent in their desire to discuss and plan for the future, stating ‘the more information you have, and the more prepared you are, the better it is for you’.

In conclusion, these interviews describe in the consumer's own words, the value of providing palliative care alongside disease-orientated care in advanced chronic lung disease. St Vincent’s recognises the early introduction of palliative care provides good quality, highly valued care for patients and their caregivers. The hospital now provides early, integrated palliative care for other chronic disease streams including those with advanced liver disease, renal disease and heart failure, and is currently piloting a model of integrated palliative care for patients living with scleroderma.

 

Authors:


Dr Julie McDonald

Respiratory and Palliative Care Physician

St. Vincent's Hospital Melbourne

 


 

References:

  1. McDonald J, Marco D, Howard R, Fox E, Weil J. Implementation of an integrated respiratory palliative care service for patients with advanced lung disease. Aust Health Rev. 2022 Dec;46(6):713-721. doi: 10.1071/AH22103.
  2. McDonald J, Fox E, Booth L, Weil J. Qualitative evaluation of an integrated respiratory palliative care service: Patient, caregiver and general practitioner perspectives. Aust Health Rev. 2023 Aug;47(4):463-471. doi:10.1071/AH23076.

Useful links

McDonald J. Impactful integration: Delivery of an integrated respiratory and palliative care service [webinar]. Safer Care Victoria. Palliative Care Clinical Networks Clinical Conversations. 14 July 2022 [cited 2023 Dec 6]. Available from: https://www.safercare.vic.gov.au/sites/default/files/2022-08/20220714_-_slide_deck_-_integrated_palliative_care_clinical_conversation.pdf

Boughey M, Crettenden A. Understanding palliative care & Caritas Christi redevelopment update [video]. St Vincent's Foundation. 24 March 2021 [cited 2023 Dec 6]. Available from: https://youtu.be/euajqx3fUFA

Barrett R. Integrated respiratory palliative care service works well for patients with advanced lung disease. The Limbic. 28 Nov 2022 [cited 2023 Dec 6]. Available from: https://thelimbic.com/respiratory/integrated-respiratory-palliative-care-service-works-well-for-patients-with-advanced-lung-disease/

McDonald J. An integrated respiratory and palliative care service for patients with advanced lung disease [blog]. CareSearch Palliative Care Perspectives. 17 Feb 2023 [cited 2023 Dec 6]. Available from: https://www.caresearch.com.au/TabId/6568/ArtMID/17907/ArticleID/4174/An-integrated-respiratory-and-palliative-care-service-for-patients-with-advanced-lung-disease.aspx

 

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1 comments on article "An integrated respiratory and palliative care service for people with advanced lung disease: Patient, caregiver and general practitioner perspectives"

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Jean Dumble

Great article Julie. If only this model could be adopted for other specialties and across the nation what a wonderful health service, we could have.

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