Best practice: A good death Part 2

IN the first part of this article we looked at advanced care planning in dying patients. Here we consider clinical competencies in quality end-of-life care – and more.

Perhaps the first matter of importance in caring for patients near the end of life is considering what the near future holds for each individual. This is a combination of probability and possibility. Consider for instance the elderly frail co-morbid care home resident with advanced dementia who is very likely to develop infection, or the patient with advanced COPD or lung cancer who is likely to become increasingly breathless. Recognising these likelihoods enables at least some degree of anticipatory planning.

Thinking about less likely possibilities can also lead to more proactive care. The patient with advanced prostate cancer and spinal metastases might develop malignant spinal cord compression, and warning the individual of the early symptoms could mean the difference between ambulatory continence and bed/chair bound incontinence for the last months or, indeed, years of life – massive quality differences.

This process is really no different from how the care of all patients should be approached: just a simple extension of basic healthcare principles into the end-of-life period.

Frameworks and pathways

A number of systems and processes have been introduced to guide end-of-life care – some more helpful than others. One very useful primary care tool is The Gold Standards Framework Scotland (GSFS) developed by Professor Keri Thomas. To some extent it has been superseded by the Palliative Care Designated Enhanced Service, which is perhaps unfortunate as the GSFS has a huge amount to offer. Indeed, for healthcare professionals working in any care setting its simple ‘7 Cs’ approach provides an ideal, loose non-prescriptive framework for palliative/supportive care. The 7 Cs of the GSFS are: communication, co-ordination of care, control of symptoms, continuity of care, continued learning, carer support and care of the dying (patients in the last few days of life).

Another helpful process for GPs to consider in community settings is Just in Case (JiC) prescribing, which involves early provision of medications that dying patients are likely to require. For example, few patients will be able to swallow in the last few days of life and so subcutaneous medications should be considered. JiC prescribing with information support tools within GP clinical systems and dedicated JiC paperwork and containers have been shown to prevent significant delays in treatment.

Common symptoms needing medication that can be anticipated are pain (opioid), breathlessness (opioid and anxiolytic), nausea and vomiting (anti-emetic), respiratory tract secretions (anti-secretory) and terminal restlessness (anxiolytic). It is important to remember also to provide complete instructions for administration. Palliative care specialists can be consulted if any extra advice is needed. Patient/carers should also understand whom to contact in the event of symptom deterioration or swallowing difficulties as this may reduce call-to-treatment time from several hours to as little as 15-30 minutes.

Closely linked to JiC is the consideration of route of administration and syringe pump use. If patients are requiring non-enteral treatments then early consideration of a syringe pump can help ensure good symptom relief with minimal patient disturbance.

In the community, appropriately trained registered nurses provide verification of expected death in the out-of-hours period. This simple system provides a more rapid service and can have increased continuity for the relatives/carers.

Unwanted interventions

Scotland’s national Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy was introduced in 2010 and similar policies have been established across the UK. In the context of palliative care they aim to ensure that futile and unwanted interventions are not attempted and thus the patient is allowed a natural death. It is helpful to consider the individual steps in the Scottish framework.

Firstly, is a cardiopulmonary arrest anticipatable? In a community setting it is possible that any death could be considered a cardiopulmonary arrest and so it is important to consider this in all dying patients.

Secondly, is CPR likely to have a successful outcome? CPR that is judged likely to be a futile intervention should not be offered. This is a clinical decision arrived at by the team caring for the patient and it does not involve the views of the patient or their loved ones though the decision should be communicated in a sensitive and compassionate fashion. However, if it is felt that CPR might have a successful outcome then communication is essential as the decision lies solely with the patient.

The DNACPR decision should be documented on the proper form which should be reviewed regularly and whenever there is any significant change in the patient’s condition or the locus of care. It is crucial that all conversations around DNACPR are in the context of trying to ensure a good and dignified death.

Patients and their families/loved ones need to be aware that this policy only deals with attempted CPR and not any other possible interventions that could be seen as resuscitative. It is very important that the CPR/DNACPR decision is communicated to all those who need to know.

Communication between professionals

Clearly good communication between the various professionals involved in the care of the dying patient is vital. In Scotland both the electronic Palliative Care Summary (ePCS) and the Key Information Summary (KIS) facilitate information transfer (including DNACPR orders) from in-hours general practice to other services including out-of-hours primary care services, acute services such as accident and emergency departments and receiving units and the Scottish Ambulance Service.

It must be borne in mind though that this is fundamentally a unidirectional transfer of information “written to” only by in-hours primary care and “read only” in all other settings. This coupled with the total absence of information provided by the patient or their family/loved ones means that it can unfortunately not be considered as an anticipatory care plan – an all too frequent misconception.

Showing you care

Apart from the clinical competencies and processes outlined above, the importance of not just caring but demonstrating caring cannot be overemphasised. Dying patients and their loved ones are extremely vulnerable and good trusting relationships between all those involved are crucial to their wellbeing.

There are two key issues that promote a trusting relationship. Firstly, the patient has to think that the professional is competent. Secondly, the patient has to feel that the professional genuinely cares. It is hard to think of any time more critical than the end of life when it is important to demonstrate not just caring for the patient but about the person – the need for compassion, the need to recognise the humanity in the individual under their care.

Why does “lack of compassion” feature so frequently in patient complaints? It is unlikely that most doctors lack the interpersonal skills necessary to demonstrate that they care. Perhaps the answer lies within the attitudinal domain. Do doctors remember the vulnerability that patients are likely to be experiencing? In palliative care the patients are, as the late Professor Kieran Sweeney says in a uniquely moving YouTube video clip, “at the edge of the human predicament”.

This is likely to be far removed from where doctors are in their own lives. What is routine and mundane for healthcare staff is likely to be unique and unbelievably strange for patients. The need to empathise underpins compassionate care. To metaphorically put on the patient’s shoes and walk about in them – think what they might be thinking and feel what they might be feeling – will afford a glimpse of the patient’s likely vulnerability. All doctors will have some experience of vulnerability and trying to remember how that felt will lead to more compassionate care.

Demonstrating care can be relatively straightforward. Indeed a risk is that this is so obvious it may get overlooked, particularly in the increasingly busy, indeed hostile, work environment. Opening a door for someone, waiting to sit till the patient is seated, helping someone on with their coat – politeness and the simple courtesies can go a long way. By careful attention to their own interpersonal behaviours the doctor can openly show interest in the individual. Adding “a little touch” to each encounter by doing something that is not task orientated but simply nice, an “unbidden act of human kindness”, will help the patient to feel genuinely cared about.

Doctors can also make care much more personal by offering a “shared kindredness” with the patient: allowing them to see the human behind the professional façade. And giving as freely of time as is possible – the unrequested home visit when the GP ‘pops in’ or the consultant just pausing at the patient’s bedside – can be extremely powerful and therapeutic demonstrations of that individual’s importance. Even the lack of time can be used advantageously. Patients know doctors are busy and so being the recipient of such a scant resource will further promote their sense of self-worth.

Unquestionably, doctors do not lack the knowledge or skills necessary to demonstrate that they care. However, one question remains – will doctors choose to use their abilities? Will they choose to care?

Dr Euan Paterson is a GP facilitator with Macmillan Cancer Support