Palliative and end of life care

1.2.1 Definition

A core value for palliative care has been to enable people to make choices about end of life care and place of death. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”⁴² Palliative care can be provided in addition to disease-modifying treatment, or become the total focus of care.⁴³ Usually, palliative care becomes more important with illness progression. End of life care is an important part of palliative care, and usually refers to care in the final months of life for patients with progressive disease, impaired function and increased symptom burden.⁴⁴

1.2.2 Who needs palliative care?

A white paper from the European Association for Palliative Care, states that palliative care is appropriate for anyone living with or at risk of developing a life threatening illness, when they have unmet expectations or needs, and are willing to accept care.⁴³ Access should not be restricted by sex, age, diagnosis or prognosis. In a cross-national study from 12 countries, Morin et al. estimated that 38-74% of people who died were in

need of palliative care.⁶ While the lowest estimate excluded people with a range of chronic conditions (stroke, ischaemic heart disease, multiple scleroris, non-Alzheimer dementia and diabetes) and thus probably underestimate needs, the upper estimate gives a more inclusive estimate of palliative care needs.⁶ The highest prevalence of palliative care needs were for people dying at home or in skilled nursing facilities.⁶ The World Health Organization has estimated that Europe has a population of about 560 per 100,000 aged ≥15 years each year, who are in need of palliative care at the end of life.⁴⁵ This corresponds to >24,000 (60% of those who died) people aged ≥15 years in Norway in 2017 being in need of palliative care at the end of life.^45-47

Clinical diagnosis

Traditionally, palliative care has been offered predominantly to people with cancer, but in recent years, more focus has been added on providing this service to people with chronic illnesses with limited survival, such as chronic heart failure, pulmonary, renal or neurological diseases, and dementia.^48-51 Seow et al. found that while 88% of decedents with terminal illness (cancer) received palliative care, this was only the case for 44% of patients with organ failure and 32% of people with frailty within a universal health care system (Ontario, Canada).⁵⁰ The terminal illness group also received palliative care at an earlier time and with higher intensity.⁵⁰ The disparity of people dying from other conditions than cancer in accessing palliative care, is consistently documented.^51-56

Functional trajectories

Differences in functional decline at the end of life and how readily the end of life can be predicted, may be contributing factors to why cancer patients receive more palliative care than people dying from other conditions. Four clinical trajectories have been proposed to explain functional decline for different groups of people at the end of life:

1) sudden death, 2) terminal illness, 3) organ failure and 4) frailty.⁵⁷ Terminal illness usually refers to people dying from cancer, with a clear terminal phase. Organ failure and frailty (e.g. dementia) on the other hand have a terminal phase that is considered more difficult to predict.⁵⁸ Gill et al. however, found there was no predominant

trajectory of functional decline for older people in the last year of life relating to cause of death.⁵⁹ The exception was dementia, where two thirds had persistently severe disability (similar to the frailty trajectory⁵⁷) in the last year of life.⁵⁹

While the trajectories using clinical conditions estimate mean trajectories for predefined groups of decedents in a hierarchal model, Gill et al. used a group-based trajectory model, where they identified the functional trajectories first and then characterized members of each trajectory with regard to causes of death. Lunney et al. compared the two methods with analyses in the same population, and confirmed that clinical conditions did not adequately predict trajectory of functional decline at the end of life.⁶⁰ While the clinical trajectories highlight that different conditions require different approaches of health care services at the end of life, trajectories of functional decline clarify that many other factors influence functional decline at the end of life.⁶⁰ Clinical condition should thus not be the only factor deciding access to palliative care.

1.2.3 Identifying people in need of palliative end of life care

Timely identification of people in need of palliative care is important to maximize benefit. There is no uniform way to objectively identify patients, and accurate prognostication is difficult.⁶¹ Trajectories of functional decline (above) may be of limited use in individuals. General indicators, such as increase in bedrest and increase in restricting symptoms may indicate that a conversation about palliative care and end of life preferences is appropriate. Both increase substantially around five months before death for older people dying of all causes.^{62, 63} Use of the surprise questions: “would I be surprised if this patient died within the next 6-12 months” has been proposed as a way to identify patients who might benefit from palliative care, especially in primary care by GPs. Reviews investigating the accuracy of this question alone, found large variability, with poor to modest performance in predicting death.^{64, 65}

Several diagnostic tools for identifying people in need of palliative care have been developed for use in general practice.^{66, 67} Many are built on each other, several include the surprise question, and all share common features such as general indicators for decline (e.g. functional status and hospital admissions) and disease specific indicators

for several conditions.^{66, 67} In most countries, however, identification of palliative care needs is still mostly based on the GPs clinical judgement and discharge information from secondary care.^67-69