End of life care in vascular surgery

Historically, vascular surgery has been associated with a lack of holistic care or insufficient consideration for non-operative management. In part, these observations stem from the fact that many vascular conditions are rapidly progressive in nature and usually exist in patients with a high burden of co-morbidity and frailty. This article defines the terms ‘end of life care’, ‘palliative care’, ‘surgical palliative care’, and ‘terminal care’, before going on to summarize published evidence, guidelines, and training curricula and to offer a ‘structured care objective consultation’ that trainees can use to increase the likelihood that offered procedures align with patients’ needs. The two vascular conditions associated with highest co-morbidity, frailty, and symptom burden—be it physiological or psychological—are chronic limb-threatening ischaemia (CLTI) and aortic aneurysm. The annual incidence of CLTI is estimated to be 22 of 100 0001 and, despite technological advances, morbidity and mortality remain high. For a patient presenting with CLTI, the major lower limb amputation rate at 6 months is 40% and the mortality rate at 1 year is over 20%2. The 30-day mortality rate after major lower limb amputation in the UK is 6.5%3, with a 2-year mortality rate greater than 50%4. The 5-year mortality rate for CLTI has been reported to be 70%—higher than that for colorectal cancer, breast cancer, stroke, and coronary artery disease5. Mortality in young patients presenting with diabetes and renal disease in addition to CLTI is even higher6. The prevalence of abdominal aortic aneurysm in the UK is 1.34%7. Patients presenting with inoperable aortic aneurysms have a reported median survival of 38 months, with only one in five of these patients experiencing aneurysm-related deaths8. In addition to these two conditions differing significantly from each other (the former being an intensely painful condition, whereas the latter is painless until rupture, but carries a significant psychological burden), they also involve end of life care needs that are different compared with those of conditions from other specialties. Therefore, evidence and guidelines specific to these conditions are necessary. Significant uncertainty surrounds the nomenclature of palliative and end of life care. The terms ‘palliative care’ and ‘end of life care’ are regularly interpreted to mean the withdrawal or limitation of care, when, in fact, they should represent the enhancement of care by stopping to ask ‘What is important to the patient?’ and making efforts to direct care accordingly9. ‘Palliative care’ is defined as care aimed at improving comfort and quality of life through relief from pain and other symptoms, integrating the psychological, social, and spiritual aspects of care and helping people to live as actively as possible until their death10. ‘Palliative care’ can be given alongside disease-modifying care and their combination constitutes ‘end of life care’. ‘End of life care’ is defined by National Health Service (NHS) England as care provided in the last year of life; however, they recognize that, for some conditions, it may be provided for longer than a year10. Despite these definitions being set out a number of years ago, end of life care is still regularly confused with ‘terminal care’ (care in the last few days of life)—even amongst medical professionals. The nomenclature for the intersection between surgical and palliative care is even more confusing. ‘Surgical palliative care’, ‘palliative care interventions’, and ‘palliative surgery’ have been used interchangeably in the medical literature. In 2023, The Surgical Palliative Care Society11 proposed standardized nomenclature—‘surgical palliative care’—which they define as ‘the treatment of suffering and the promotion of quality of life for seriously or terminally ill patients receiving surgical care’12. End of life and palliative care guidelines are published by international surgical societies (Table 1). The guidelines broadly fall into three categories: non-comprehensive guidelines, with a few specific recommendations based on low-quality evidence, such as those of the European Society for Vascular Surgery (ESVS), the Society for Vascular Surgery (SVS), and the Vascular Society of Great Britain and Ireland (VSGBI); more comprehensive generic end of life care guidelines, such as those of the Royal College of Surgeons of England (RCS England); and more comprehensive evidence-based guidelines relevant to surgery in general, such as those of the American College of Surgeons (ACS). End of life and palliative care guidelines by international surgical society AAA, abdominal aortic aneurysm; CLTI, chronic limb-threatening ischaemia; GSF, Gold Standards Framework; SPICT, Supportive and Palliative Care Indicators Tool; ACP, advance care planning; GMC, General Medical Council; DNACPR, do not attempt cardiopulmonary resuscitation. End of life and palliative care guidelines by international surgical society AAA, abdominal aortic aneurysm; CLTI, chronic limb-threatening ischaemia; GSF, Gold Standards Framework; SPICT, Supportive and Palliative Care Indicators Tool; ACP, advance care planning; GMC, General Medical Council; DNACPR, do not attempt cardiopulmonary resuscitation. The VSGBI’s ‘Provision of Services for People with Vascular Disease’18 states that patients with inoperable abdominal aortic aneurysms, advanced CLTI, or diabetic foot disease should be considered for end of life care planning and that all vascular patients admitted to hospital should have a treatment escalation plan that includes a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision. The National Institute for Health and Care Excellence (NICE) 2019 adult end of life care guidelines13 go further to specify that all three of these groups should be ‘offered’ end of life care, that is disease-modifying treatments if needed and palliative treatments if needed. However, research to date suggests that the requirements of VSGBI and NICE are not being met and research regarding patient-reported outcomes in this area is non-existent19–21. Guidelines on end of life care for all patients are published by NICE, WHO, and Diabetes UK, as well as tools to indicate people in need of end of life care: The University of Edinburgh’s Supportive and Palliative Care Indicators Tool (SPICT) and the Gold Standards Framework (GSF) tool (a community end of life care register and improvement programme) (Table 2). These guidelines do not contain direct references to, or palliative interventions specific for, CLTI or aortic aneurysm. End of life and palliative care guidelines by organization ACP, advance care planning; CLTI, chronic limb-threatening ischaemia; AAA, abdominal aortic aneurysm; COPD, chronic obstructive pulmonary disease. End of life and palliative care guidelines by organization ACP, advance care planning; CLTI, chronic limb-threatening ischaemia; AAA, abdominal aortic aneurysm; COPD, chronic obstructive pulmonary disease. A trajectory towards death with a stepwise decline in function, experienced by patients living with CLTI, is not considered in existing end of life care studies33 and it is not present in commonly used tools to identify people in need of palliative care, such as SPICT16. Amputations aimed at increasing length of life result in a significant decrease in the functionality of patients and their ability to perform activities of daily life and are often accompanied by a corresponding increase in support required from relatives and carers. A cohort study of over 12 000 CLTI patients in Canada found that only 7% received palliative care evaluations, which took place, on average, far closer to death than diagnosis19. This cohort had a mean survival of 268 days19. Pain in CLTI impacts on quality of life and health status significantly34, yet strong evidence is currently lacking regarding the efficacy of any of the commonly used analgesic agents. A 2017 systematic review of pharmacological therapies for the management of ischaemic pain in CLTI was unable to make recommendations for any of the agents in the screened studies35. Evidence on analgesia for ischaemic pain, as well as on interventions to address other physiological symptoms, psychological symptoms, and social and spiritual needs, is urgently needed. Some vascular guidelines seem to confuse palliative care and terminal care, specifically stating that ‘palliative therapy should rarely include revascularization except in special circumstances’, despite this meeting the defined criteria for end of life care3. This shows the importance of uniform nomenclature that can be understood across specialties and professions. Non-operatively managed aortic aneurysms that have reached the treatment threshold diameter have a 3-year mortality rate of 55%, with the majority of patients dying from causes other than rupture20. However, the psychological impact of living with a potential rupture, and the efficacy of interventions aimed at alleviating the psychological trauma stemming from it, are little understood. Despite the existence of multiple end of life care guidelines for this cohort, their use, including the utilization of available tools and registers, is lacking. The study by Davies et al.20 on non-operatively managed aortic aneurysms that have reached the treatment threshold diameter found that only 8% of the patients had documentation of a palliative care consultation and fewer than 5% of the patients had documentation of a preferred place of care/death36. Palliative care consultations took place less than 4 days before death20. Other work has confirmed that only a very small proportion of patients with unplanned vascular admissions received end of life care in line with international guidelines13,18,21. Comprehensive advance care planning discussions conducted by formally trained professionals that ascertain whether a patient wants to be taken to hospital for consideration of emergency surgery or remain at home, as well as the resources and infrastructure necessary to make both options viable, are needed. Realization of a home death for these patients would require education of patients and carers to recognize signs of a rupture, routine use of palliative care registers, such as the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) and the GSF tool, and ‘Just in Case Emergency Medicine Boxes’37 in patients’ houses containing anticipatory medications. Although arrangements to facilitate home death exist in specialties such as oncology, there are currently no recommendations or evidence on this for vascular patients. A systematic review on palliative care interventions for abdominal aortic aneurysm and CLTI38 identified eight relevant papers, only one of which had meaningful patient/carer-reported outcomes. The other studies mainly reported outcomes available to retrospective studies, such as length of stay and healthcare cost. All, except one small CLTI study, were retrospective in design. Although there was insufficient evidence to perform a meta-analysis, a correlation between palliative care and patient- and carer-perceived quality of care and communication was evident. The quality of evidence of these studies ranged from low to medium38. Since this systematic review was conducted, cohort studies examining end of life quality markers (time spent in hospital in the last 6 months of life, unplanned hospital admissions, time spent in the ICU in the last 30 days of life, family involvement in advance care planning, attainment of care objectives, and hospice referral) for non-operatively managed aortic aneurysms and unplanned vascular admissions have been published20,21. These studies have shown that, although only a small proportion of eligible patients are offered end of life care, there is correlation with some of these markers, such as family involvement in advance care planning discussions20,21. Nevertheless, they failed to demonstrate improvement in the majority of them20,21. It is likely that this is due to the discussions being carried out too late to have a meaningful impact. Prospective research to fully assess the effect palliative care interventions have on meaningful patient- and carer-reported outcomes, and increased integration between palliative and surgical specialties, are needed to establish comprehensive evidence-based guidelines and develop new palliative care techniques. Vascular surgery is not alone in its underutilization of palliative and end of life care. A systematic review looking at all palliative interventions for surgical patients found limited evidence regarding interventions to introduce or improve palliative care for surgical patients, which was further limited by substantial methodological flaws39. Research on the surgical palliative care needs of the general surgery population, however, has been more comprehensive. One paper identified four factors (patient, surrogate, surgeon, and systemic factors) that lead to a breakdown in communication and to the occurrence of non-beneficial procedures40. Effectively four stakeholders are involved in deciding whether a patient goes to theatre. Surgeons experience these on a daily basis: the patient; the family, asking surgeons to ‘do anything’ whilst not fully comprehending the pathology and high mortality of the underlying condition; colleagues, with surgeons wondering how they will judge decisions; and finally the theatre and whether it is open/busy/staffed (and all of these influence clinical decision-making). It is often simply easier to make the decision to operate and begin all the subsequent steps that getting to, through, and from theatre entail, rather than dealing with the uncertainty that non-operative management brings. Significantly, it is the first—and most important—of these voices that is often the weakest, as the patient—even more so in emergency vascular conditions—is regularly in septic/hypovolaemic shock, anaemic, malnourished, suffering an acute kidney injury, or even delirious. Vascular pathologies, such as abdominal aortic aneurysm and CLTI, disproportionately affect people from lower socio-economic backgrounds41,42 and this could be compounded by a breakdown in communication43, the occurrence of non-beneficial procedures, and a lack of end of life care and advance care planning discussions. The authors of the present article recommend a structured approach to explain the clinical situation and available options, define patient objectives, and select the management that most closely aligns with these40. Of the eight papers included in a prior systematic review, none included training38. Despite the RCS England guidelines having recommended regular mandatory end of life care training for all healthcare professionals (including doctors) over 5 years ago, palliative care is only mentioned once in the 2023 UK vascular surgery training curriculum44; end of life care is not mentioned at all and neither palliative care nor end of life care is featured in any of the recommended reading papers for the training programme exit exams. This is similar to other surgical specialties45. As shown in Table 3, end of life and palliative care are an integral part of the US vascular surgery training curriculum; they feature briefly in the UK curriculum and not at all in the European curriculum. Surgical training curriculum end of life and palliative care summary DNR, do not resuscitate. Surgical training curriculum end of life and palliative care summary DNR, do not resuscitate. The emphasis on end of life and palliative care in UK and European training programmes must be increased to provide future consultants with the armoury to treat patients approaching end of life. Once sufficient research has been conducted into ‘vascular surgical palliative care’, this—in combination with expert consensus involving both vascular and palliative professionals—should be used to develop training on how to identify patient care objectives and align them with subsequent management plans. Research published to date has shown a distinct lack of documentation of patient care objectives, such as preferred place of care/death and care priorities20,21,38. Routine use of the ‘structured care objective consultation’ below would increase documentation of these, provide better evidence of patient and carer understanding of the potential outcomes of available management pathways, and provide vascular surgeons with confidence their plans align as closely as possible with the objectives of the patient. A standardized approach will help reduce non-beneficial procedures and choose the right pathway for the patient. Situation: explain the underlying pathology, the severity, and the associated morbidity and mortality figures in easy to understand numbers to the patient and family/carer. Objective: elicit the patient’s wishes for the outcome of the medical encounter—for example ‘Do they want to extend the length of their life at all costs, despite the possibility that they will never recover to their baseline function or will need a wheelchair for the rest of their life for mobility?’ and ‘Are they willing to undergo a long intensive care stay with invasive procedures and a long hospital stay to meet their objectives?’. Analysis of options: explain the realistic outcomes from previous clinical experience and published literature for each of the available options. Plan: decide on plan of action with the patient and family/carer. It is the role of surgeons to have candid conversations with patients facing life-limiting vascular conditions that facilitate attainment of the four aspects of palliative care (physiological and psychological symptoms and social and spiritual needs) at an early stage to exert a meaningful effect on quality of life. Unfortunately, research to date indicates that existing end of life care guidelines are not delivering care for vascular patients in line with other specialties. Future research to investigate the reasons for this, to investigate the effect existing palliative care interventions have on quality of life, and to develop novel interventions is needed to guide comprehensive guidelines within vascular surgery. In addition to a more complete understanding of the specific needs of patients, formal links to improve integration between vascular surgery, palliative care, and primary care are needed, along with formal palliative and end of life care training for vascular surgical teams; these are all imperative to improve the quality of life and death of patients. The authors have no funding to declare. Henry Davies (Conceptualization, Project administration, Writing—original draft, Writing—review & editing), David A. Russell (Conceptualization, Supervision, Writing—review & editing), Barend M. E. Mees (Conceptualization, Supervision, Writing—review & editing), and D. Julian A. Scott (Conceptualization, Supervision, Writing—review & editing) The authors declare no conflict of interest.