A good death

In the first of a two-part series Euan Paterson, a Macmillan GP facilitator, discusses the challenges of providing high-quality palliative care in the community

ROBERT is 75 and dying of metastatic lung cancer. He presented late and no further treatment is possible. He has become housebound due to breathlessness, weakness and pain. His wife has made six house call requests in the last four weeks and Robert has been seen by five different doctors. He has not been seen by a community nurse.

Robert has little idea of what is happening and no idea what to expect. He and his wife are becoming very anxious. He now finds everyday activities a struggle. He can no longer get out of bed and can barely swallow his medication. It is a week since he was last seen but his wife is reluctant to call as she feels they are a burden.

Robert wakes at 03:00 on Saturday morning with worsening pain and increasing anxiety. Despite all her best efforts his wife cannot manage to get him to swallow his painkillers. She phones NHS 24 and a visit is arranged. A GP arrives 90 minutes later and, though very attentive, clearly has no idea of Robert’s treatment up to this point.

An injection of diamorphine alleviates Robert’s pain but he is unable to swallow diazepam and his mouth is too dry for lorazepam s/l. A prescription for midazolam is written and the OOH service contact the on-call pharmacist. At 06:15 the medication arrives via the palliative care taxi and a community nurse administers midazolam s/c. Robert’s anxiety is relieved.

The following day a syringe pump is commenced and Robert remains symptom free. Four days later his wife wakes at 05:15 and finds him cool. She ‘panics’ and phones her daughter who isn’t sure what has happened and so tells her mum to dial 999. Robert’s wife is told to start CPR. An ambulance arrives 18 minutes later and the futile CPR is stopped. The ambulance crew contact the OOH service and a doctor attends. Robert is pronounced dead. His wife feels angry, guilty, sad and confused. She doesn’t know whom to turn to.

Would you consider Robert’s death a good one for both him and his family? What do you think went wrong and more importantly why did it go wrong?

For many doctors, palliative care is one of the most important and difficult aspects of their job. Though the number of dying patients an average clinician will treat may be relatively small, the impact of a death for all those affected by it cannot be over emphasised.

When thinking about how to provide high-quality palliative care it is helpful to consider two broad headings – competencies and caring. Consideration of the first is probably more commonplace and to some extent easier. There are structures and processes and initiatives and programmes that have been introduced in efforts to improve care of the dying and these have led to very significant changes.

The other factor – caring – is more nebulous. Even if our competencies are excellent, in isolation these will not be enough to ensure a good death if ‘caritas’ is not present and demonstrated.

Identifying the dying patient

Not all patients facing a serious life-limiting illness are in need of immediate supportive and palliative care. Identifying those patients who have reached that stage is a key challenge, particularly in patients with nonmalignant disease. Certain factors need to be taken into account, including the underlying disease process, the current condition of the patient and their rate of decline.

A number of resources have been developed to help identify this group of patients, including The Scottish Prognostication Indicators Tool (SPICT) and The Quick Guide to Identifying People in Need of Palliative Care, developed by London-based Dr Patrick McDaid, which includes the “surprise question” – would you be surprised if this patient was to die in the next six months?

The drawback of these tools is that they can generate large numbers of patients needing palliative care. A balance needs to be struck between taking into account only those patients at the very end of their life and being over inclusive. Palliative care can be considered from first diagnosis in many conditions but there is a risk that viewed in this fashion the patient cohort may be too large to allow clinicians to focus on those patients most in need.

In addition some people with nonmalignant but incurable conditions may struggle with the concept of palliative care and indeed may be reluctant to even see themselves as having a life-limiting condition. This makes ‘labelling’ the patient even more difficult.

It could be argued that quality of care should be the same for all, whether the patient is suffering with, say, a long-term condition or is nearing death. Palliative care may be viewed simply as good care for people who happen to be dying. One recently introduced process, The Key Information Summary (KIS), may aid in this area by encouraging focus on clinical need rather than proximity to death, but it should always be borne in mind that identification of palliative care needs is not a simple matter. The experience and intuition of the healthcare professionals involved are vital.

Advance/Anticipatory care planning

Having identified those patients needing supportive and palliative care the next step is to ensure adequate planning of that care. Increasingly the term advance or anticipatory care planning (ACP) is being used. Though the impression may be that it is some new system/process, it is really just an extension of basic healthcare planning into the end-of life-period and should be no different, in principle, to how all patient care is approached. ACP tends to be viewed in three domains – medico-legal, clinical and patient issues – however this separation is artificial and there is huge overlap.

Capacity

Probably the most important medico-legal aspect of care planning is capacity, or the ability to use and understand information to make a decision. Patients facing a possible loss of capacity in the near future should be encouraged to consider granting both welfare (health) and continuing (financial) powers of attorney (PoA). If capacity is lost and no such arrangement is in place then an application for guardianship or an intervention order may need to be considered.

Next of kin does not carry any legal status, and though it is important to be aware of the views of the patient’s family, there is no obligation to act on these views if not judged to be in the patient’s best interests. This is a complex and potentially fraught area often requiring legal expertise.

Wants and wishes

Being aware of the wishes of the patient, their relatives and carers is hugely important in care planning. A useful communication tool called My Thinking Ahead & Making Plans (MTA&MP) can help in this area. It was developed initially by Dr Kirsty Boyd and Professor Scott Murray of the University of Edinburgh and is intended to promote a clearer understanding and sharing of patient priorities. Increased use of such tools coupled with a more open acceptance of the inevitability of death can help to encourage patients in the creation of an advance statement – a verbal communication or a written record of what the patient would wish to happen in certain circumstances.

Such statements may contain a number of elements. First, it might detail information regarding aspects the person considers important, for example what makes life worth living, spiritual beliefs and so on. This is sometimes referred to as ‘a statement of values’. Second, it may identify preferences and priorities for practical things to be done to inform future care (e.g. ‘I would like to be cared for at home as long as possible’). This may be described as ‘a statement of wishes’.

Third, an advance statement may describe particular treatments or procedures that the person would not wish, for example cardio-pulmonary resuscitation. These are referred to as ‘advance decisions to refuse treatment’ (ADtRT) and under English and Welsh law are legally binding. No similar statute exists in Scottish law but it is likely that a rigorously prepared ADtRT would be viewed in court as legally binding.

Finally, an advance statement may also indicate who the patient would wish to be involved and consulted in the decisionmaking process. It must be remembered that, in the event of loss of capacity, the named individual has no powers to make decisions unless a welfare power of attorney is legally granted.

A clearer awareness and indeed an understanding of what lies behind the wishes of the patient should make it more likely that these wishes will, where possible, be acted upon. It will also help clinicians to care about and not just for the patient. This ‘being with’ the patient may go a long way towards a feeling of ‘spiritual care’ that is so important at these critical times.

Dr Euan Paterson is a GP facilitator with Macmillan Cancer Support

Part 2 in the next issue of Summons will look at clinical competencies in palliative support and also further consider the demonstration of care and compassion