Shona McIntosh, Vascular Clinical Nurse Specialist
Patients who have undergone failed revascularisation of their leg, resulting in amputation are likely to have a poor prognosis because it indicates that their cardio-vascular disease has reached end stage. Of this cohort of patients, 40% die within a year of undergoing amputation and 73% will have died within 5 years (Singh 2005). Data collected from North Bristol NHS Trust in 2015 shows only slightly lower figures: of 103 patients who underwent amputation, 33 (32%) have since died with an average length of time from amputation to death of 5.3 months. Literature focusing on the needs of this group of patients is limited, with one single article suggesting that specialist palliative care is underutilised with referrals made shortly before death (Dale 2017).
Palliative care is defined by WHO (2008) as ‘an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness. It prevents and relieves suffering through early identification, correct assessment and treatment of pain and other problems’. Research focusing on the palliative needs of patients with non-malignant conditions such as heart failure and lung disease who are reaching the last 6 -12 months of life, has demonstrated that their needs are akin to patients with malignant disease (Nolte 2008), and that their symptoms are at least as intense and complex (Stiel 2015).
It is reasonable to presume therefore, that patients who have reached the end stage of peripheral vascular disease have similar information and symptom management needs. Anecdotal evidence and limited published literature suggest that commonly the needs of this group of patients are overlooked because they are not identified as being in the terminal phase of their disease. There are several possible contributing factors for this: patients with peripheral vascular disease often have unpredictable disease: general physical decline with episodes of acute deterioration, the focus of much of their disease is curative, and multiple comorbidities all make prognostication complex.
The benefits of early recognition that patients are entering the end stage of their disease are well documented (DoH 2008, NICE 2013) and include:
- informed decision making on the part of the patient and health care professional
- allowing patients to prioritise personal commitments
- advanced care planning is proven to significantly impact on patients preferred place of death, reduce inpatient bed days and frequency of admissions (Abel 2013)
- improve communication between primary and secondary care
- ensure that patients are placed on GPs supportive care register.
This proposed study aims to identify this cohort of patients’ physical, psychological, social and spiritual needs, and to identify barriers preventing early recognition that they are reaching the terminal stage of their disease.
This will start with a comprehensive literature review using national and international search terminology, and considering whether this group of patients palliative needs could be aligned to another chronic disease group. Following stages include a questionnaire to all vascular departments in England and interviewing a group of patients and a sample of bereaved relatives to identify their physical, psychological, social and spiritual needs.
Project Update – Summer 2018
I was awarded a £10,000 grant from the NBT Research Foundation in June 2017, to backfill one day per week of my job as a vascular clinical nurse specialist over the course of a year, and allow me to focus on my proposed research project looking at the palliative care needs of patients with end stage peripheral arterial disease.
Clinical workload meant that I was unable to start my project until January 2018.
At the end of January 2018, with support from Sharon Nolan in the R&I department, I held a PPI group with four patients.
Topics discussed over the two hour meeting included:
- the benefit to patients of open and honest communication between clinician and patient/family member
- estimating and discussing prognosis with patients: how, where and when conversations should take place
- How communicating uncertainty is complex in a clinical situation, but that patients should still be provided with information as requested.
I have used this information to guide my project, but have also discussed it at clinical governance meetings with my consultant colleagues.
I commenced a systematic review with advice and guidance from Dr Sam Harding, using information gained from the PPI group to influence the search terms.
The systematic review is registered on PROSPERO: Adults with peripheral arterial disease: is prognosis discussed? At what stage of their disease trajectory should prognosis be discussed with an adult patient with peripheral arterial disease of their lower limb?
The search identified just over 18,000 articles which I have reduced down to 400 possibly relevant articles, and am in the process of reading their abstracts.
I have also had a meeting with Rosemary Greenwood from the Research Design Service to discuss planning of my ongoing project and opportunities for further funding. I have another meeting planned for the beginning of October.
I intend to apply for an HEE/NIHR clinical doctorate fellowship in March 2019.
I am so very grateful to the NBT Research Foundation for allowing me the opportunity to start this exciting project. Thank you.