What is the role of specialist palliative care in the management of home-based people dying from non-malignant conditions?

Key Points

• Editorial to accompany: Evaluating Palliative Care Case Conferences in Primary Care for Patients with Advanced Non-malignant Chronic Conditions: A Cluster-Randomised Controlled trial (KOPAL)  ^[1]

• People with end-stage non-malignant conditions are under-represented within specialist palliative care (SPC). Is this appropriate?

• SPC’s role should differ due to the more uncertain trajectory of non-malignant disease.

• SPC could contribute to a care plan, along with the patient’s care team, generated by a case conference.

• A care plan can empower patients and carers to self-manage relapses before referral to hospital.

The delivery of palliative care for people with advanced chronic conditions is a major challenge. The trajectories of these illnesses are long and unpredictable, which makes the delivery of end-of-life care hard to plan [1]. Specialist palliative care (SPC) services were initially developed for people with advanced cancers, in which dying in general has a predictable course over days to weeks or months.

People with cancer constitute the majority of most SPC teams’ workload, and non-malignant conditions may be under-represented [2]. Most people who die in developed countries are older than 70, and most die from dementia, frailty and organ failure [3]. Currently the management of these conditions is not usually the responsibility of palliative care. SPC is stretched as it is [4]– can it realistically be involved in their care in a substantial way without a dramatic increase in the specialist palliative care workforce? [5].

Non-malignant diseases have different trajectories to cancer [1]. People suffering end stage heart and lung disease have unpredictable relapses and remissions, and very limited function when in remission. Thus their life expectancy can range from days to years, with heavy disease burdens. Dementia has a slow steady decline over years with progressive loss of the capacity to sustain normal activities of daily living, and ultimately physiological functions essential to survival. Many sufferers of advanced dementia live their final months in care homes.

The aim of the German KOPAL (‘Effectiveness of a concept forstrengthening interprofessional collaboration for patientswith palliative care needs’) study [6] was to increase referrals of cardiac failure, COPD and advanced dementia to its home-based SPC (SPHC), by searching out these patients from GP populations and generating a care plan through a consultation with the patient, followed by a case conference between the patient’s GP and the SPHC.

Case conferences are formal meetings between members of a care team, with the aim of formulating a plan of care. When considering how to manage life-limiting chronic disease, the preferred approach is to consider current and anticipated disability and complications across physical, psychological, social and spiritual domains [7]. The plan should include actions that can be enacted at home by carers when a relapse occurs, thus possibly avoiding the need for hospital care.

In our limited, non-randomised, before and after trial of case conference and care planning in advanced heart and lung disease, we demonstrated precipitous drops in emergency department visits, and reduced rates of hospitalisations with shorter stays [8]. Cost savings were substantial [9]. We hypothesised that SPC and more complex care would be needed less often if carers were empowered with plans and the means with which to carry them out at home when complications arose. SPC involvement was limited to developing the plan in conjunction with the GP and specialist disease-based team. It differed from the KOPAL trial as recruitment was through hospital-based specialist teams and not through general practices, and there was already significant hands-on involvement by the specialist outreach nurses who were part of these teams. The intervention involved a structured case conference which ensured all common palliative care needs of patients and carers were considered, and generation of a care plan agreed to by the patient, after which a copy was held by the involved health teams. It allocated tasks to named team members, so the plan also created health professional accountability. The result was a plan where patients and carers were empowered to act when crises occurred, and all the required elements were in place as far as possible.

Anticipatory care planning for the end of life requires recognition of people approaching the end of life. Various instruments to identify these people are available [10]. A systematic scan of a practice population to identify these people is desirable, but difficult to achieve. Further, once identified, how should a GP respond?

Most GPs do not rely on formal assessment tools, or screening of patient databases, but on observing an increased rate of deterioration at routine consultations [11, 12]. How GPs approach patients considered at risk of dying depends on their assessment of the willingness of the patient to accept their progress towards death, or not [11]. GPs did incorporate symptom control to standard care, either in conjunction with the patient, or instinctively if the patient was judged not to want to confront approaching death.

Early identification and planning can be facilitated in general practices. Current strategies include development of a Key Information Statement in Scotland [13], routine searching of common patient records in Spain [14], and facilitating consideration of the risk of dying by providing a suite of decision-making tools to the nurses conducting in standard older persons's health checks in Australia [15]. A response proportionate to the risk of dying can then be offered [15].

The distress of carers cannot be overstated and is often overlooked. Specific means of identifying oft unspoken needs and questions are available and highly recommended [16, 17]. If needs are not articulated, they cannot be addressed. Ultimately it is the carer who makes the decision to refer patients to hospital. Empowering them with knowledge, support and treatment strategies will help to reduce the sense of helplessness that can propel a patient into hospital, often unnecessarily.

The KOPAL study is a valuable addition to the literature. The aim of the conference was to increase timely referral to SPHC teams of non-malignant disease, where it was judged to fail. Future studies might consider an alternative role for specialist teams: empowerment of carers, and members of other teams who will have carriage of most deaths in the community.

It is important to gather more information before a firm verdict can be delivered on the usefulness or otherwise of case conferences.

Declaration of Conflicts of Interest:

None declared.

Declaration of Sources of Funding:

None declared.

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