Perspectives in Palliative Care Palliative Care in non-cancer conditions Dr Claire Douglas Consultant in Palliative Medicine

Overview of the afternoon Introduction – Why do we need to address the issue of palliative care in non-cancer conditions Presentations from non-cancer specialties Summary and objectives for the group

Death in Scotland Number of deaths per year is expected to rise by 9000 to 62,000 per year by 2037 (ONS, 2015) Location of deaths in Scotland: Acute setting 52.3% (Decreasing) Community 30.3% (Increasing) Hospice 17.4% (Increasing) (Sharpe et al, BMJ Supportive and Palliative Care 2015) On a given day in Scottish hospitals: 30% of those admitted died within the next year 10% die during that admission (Clark et al, Pal Med 2014) Number of people with unmet palliative care needs in Scotland – estimated 10,000. Significant part of the health budget is spent on people in the last year of life, often getting interventions which they may not have wanted if they’d known that they were in the last year of life and which often don’t improve quality of life or survival.

Deaths per GP in the UK Home death more likely if: Cancer Young Professionals to support carers Live with someone But palliative care is still often thought about for patients with cancer, and often thought about when people are in the last days / hours of life. But as you know, most people die of other things. The average number of deaths a GP will see each year is 20 per 2000 patients per year and only ¼ of these are due to cancer. A person is more likely to be able to die at home, if ……

Symptoms Symptom Cancer % HF COPD CKD Dyspnoea 10-70 60-88 90-95 11-62 Pain 35-96 41-77 34-77 47-50 Fatigue 32-90 69-82 68-80 73-87 Depression 3-77 9-36 37-71 5-60 Anxiety 13-79 49 51-75 39-70 Anorexia 30-92 21-41 35-67 25-64 Symptom burden of people with non-malignant conditions can be equally bad or more severe than the symptoms people with cancer suffer. In addition, the high symptom burden can often go on for a longer period of time than in people with cancer. Solano, Gomes and Higginson JPSM, 2006

By 2021 all people who need palliative care should have access to it’

What is palliative care and end of life care? Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (WHO, 2010) It is part of core business and need varies: Generalist palliative care needs Specialist palliative care needs End of Life care relates to last year of life Care of Dying – last days / hours of life

Because Palliative Care is for people with a life – threatening illness, people requiring a palliative approach, may go onto recover and so the most up to date model is the bow tie model, which depicts that a palliative approach may be required early on at diagnosis when disease management is the main focus, and occasionally when people survive. For example, kidney patient with significant pain / nausea who I’ve been seeing who has recently had a pancreas / kidney transplant. Still has difficult pain / psychology, so I’m seeing her but will discharge her soon.

What do people want at the end of life To be with loved ones To avoid life prolonging treatments and interventions To put their affairs in order To have good symptom control *can only achieve this if we recognise that they may be approaching end of life, are able to communicate this and have the skills to control symptoms alongside optimal management of the underlying condition And this is the difficulty

Barriers to palliative care in non-malignant disease Difficulty in recognizing patient may be in last months / year of life Uncoordinated care / communication between primary and secondary care Concern that conversation removes hope Patient / carer lack of understanding ‘I don’t have cancer’ Medical perception that death is a failure Lack of skills in symptom control Lack of specialist palliative care resources

Prognostication Disease Trajectories I’m sure you are all familiar with the disease trajectories. For non-malignant conditions, it is hard to predict when the person is going to die, but we can still have a good idea that the person ‘may’ be in their last year or so of life and that a palliative approach, focusing more on symptoms and advanced care planning may be more appropriate. So what healthcare professionals need to get better at is recognising that a palliative approach might be appropriate, where a focus can occur on addressing symptoms and planning for the future, rather than specifically focusing on if the patient is actually in the last months of life or not. Murray et al. BMJ 2005 11

Triggers for palliative care approach and assessment Unplanned hospital admission(s). Performance status is poor or deteriorating Significant weight loss Persistent symptoms despite optimal treatment of underlying condition(s). The person (or family) asks for palliative care; chooses to reduce, stop or not have treatment; or wishes to focus on quality of life.

Review current care and care planning. Review current treatment and medication Consider referral for specialist assessment if symptoms or problems are complex Agree a current and future care plan Review treatment. Start having an honest conversation about the realistic wishes of the person.

Summary Palliative Care needs in non-malignant disease are high Optimal medical management can occur alongside palliative approach Should focus on the problems not prognosis for non-malignant disease and plan for future deterioration How can this group help address the palliative needs of patients with non-cancer illness in Tayside?