The Assisted Decision Making (Capacity) Bill 2013 is in its final stages in Dail Eireann, and is likely to change the way doctors and nurses engage with patients on the topic of their end of life care. 

Ideally, end of life planning (EOLP) is a long term process, which if undertaken effectively will deliver benefits to patients, their families and society. The natural response of people and their doctors is to recoil from it, avoid it, and to fail to engage with an important, complex and inevitable part of life. If you address and think beyond that reflex phobic response, and begin to have discussions with yourself, your nearest and dearest, and to engage in end of life planning discussions with patients regarding their insights and preferences, you may well find that it becomes a valued part of your practice, and enriches your consulting.

Discussing death 

In Ireland, we are uncomfortable discussing death and dying, but there are several undesirable outcomes for patients and families which result from this failure in communication.¹ Patients may labour under the misperception that they are stable, when in fact their situation has become precarious. They may fail to make decisions regarding their estate, their funeral details, how they would like their medical care to be arranged, all of which issues can become incredibly divisive among families, themselves distraught. At a personal level, there may be uncertainties which patients wish to explore with us, but if we remain adamantly, busily and narrowly therapeutic in our approach, they may feel unable to do so. The net result is isolation, increased anxiety and anguish for the patient. Death finds them unprepared. As GPs, particularly when on call, we often transfer patients at the end of their lives, who are unknown to us, into the emergency department, acting in a state of ignorance regarding the patient’s wishes, and concerned regarding medico-legal uncertainty.

Recognising this, the Forum on the End of Life and The Irish Hospice Foundation have worked to put in place solutions. One important outcome is the ‘Think Ahead’ end of life planning tool, available at www.thinkahead.ie under ‘Resources and Links’ or from the Irish Hospice Foundation at 01 679 3188. Launched in 2011, it has been used in several clinical settings, including general practice. Over 40,000 have been issued by the Hospice Foundation.

How to ‘Think Ahead’ 

There are many reasons we do not think ahead, but no good ones. It is not built into our clinical thinking. We think and talk about diabetes care for example, but very little dialogue on this reflects the fact that all diabetes patients will die, often in a reasonably predictable manner. Other reasons we don’t think ahead are because of busyness, because of fragmented care, because of a fear of upsetting patients and families, and finally because we are not quite sure of when and how to go about it.

Firstly, there is ‘When ?’ There are several points at which the conversation can be easily initiated. The earlier the better. It works best when the patient is well, alert and feels in control. It is a lot more difficult when they become distressed, confused and anxious. The discussion should be considered along several milestones. The first consult over 50 years of age, or shortly after the confirmation of an important diagnosis (eg. diabetes), or at 65 years of age, or shortly after going into residential care for example, would all be good points to initiate the discussion.

As clinicians we are adept at handling difficult and sensitive topics, and we are confident in this skill. Use of ‘Think Ahead’ complements this, and by using it, we are in a better position to practically assist patients and families. ‘Think Ahead’ is available and designed for use by individuals, and encourages them to engage with their own friends and families. It can be given in the consultation as a booklet, and it includes relevant information to aid in decision making, together with a checklist approach to the important decisions which are useful to make and to document in advance. Ideally, the patient brings it out of the consultation, and does the work at home, with a trusted family member or friend.

In consultation, the issue can be tactfully raised, the booklet provided, and an open door left to come back and tease out any additional uncertainties. Experience and research shows that most patients and families engage very effectively with ‘Think Ahead,’ they view it positively, and are appreciative of it. 

Using the Think Ahead tool in practice

We have used Think Ahead in the general practice setting in five practices. Initially it was presented to a sample of 100 clinically stable 40-70 year old patients attending for routine unrelated care to ascertain if they found it useful and acceptable, and also to solicit their comments on the content and layout for the purpose of further refinement. Despite the central topic, (a reflection on their own death and dying) feedback was strongly positive. There were no instances where major upset was caused; 86% felt the tool should be introduced more widely. Over six out of 10 indicated ‘no difficulty’ in completing the folder. Crucially, 84% indicated that engaging with ‘Think Ahead’ resulted in them discussing end of life planning with their family.²

We have separately used ‘Think Ahead’ during multidisciplinary learning with nursing home staff, and we are now using it in further studies with samples of complex frail patients who are considered to be pre-terminal based on the SPICT screening tool,³ and a sample of elderly individuals discharging from recent acute hospital admissions. Experience is positive, both from patients, family and GPs. In the coming months, the ICGP will be launching a CPD blended learning consultation skills package, which is suitable for use by all the practice team, demonstrating consultations with patients who have used Think Ahead in practice. 

The dying patient – what is the role of the GP now ?

During recent decades, our involvement with the care of our dying patients has evolved. Prior to the hospice movement, death in the community was exclusively the preserve of GPs and public health nurses, and was a very challenging part of practice. More recently, the highly effective input of community based palliative care teams has largely taken on the burden and complexity of symptom control, particularly in the pre-terminal phase of illnesses. 

In all of this GPs might reasonably feel either redundant or misplaced, but arguably if you strongly believe in personal, life-long care, being somewhat freed from the technical aspects of palliative care does provide an opportunity instead to maintain your strand of personal care with the patient and family, to remain with them as they negotiate the uncertainties of death and dying. Your experience and presence will be appreciated and meaningful, should you choose to remain engaged. ‘Think Ahead’ is a good place to start with this, and to start the conversation.

Case 1 

Mary is a 57-year-old lady with progressive metasatic lung carcinoma, now two years post-diagnosis. She has progressed beyond curative treatment, but remains independent in the community. Her prognosis is highly uncertain, and she understands this. It has been the subject of previous conversations. When attending for her flu vaccine, she was invited to take a copy of ‘Think Ahead.’ She was advised that in the practice, we were increasingly using it to guide many of our patients who have complex medical conditions. She was aware of it already, and had seen a poster in the waiting room on it. 

On a home visit for a chest infection three weeks later, she mentioned that she had completed ‘Think Ahead.’ She found it complete, and while she had already considered many aspects of it, there were some things that she found she hadn’t. She had always maintained a lovely home and garden, and her own GP had assumed she would want to die at home. ‘Absolutely not,’ she said, ‘I want to die in the local hospice.’ She knew that her dying and her own funeral would be a very busy time for her family, and she wanted the home to be an oasis of peace for her children. ‘In those days, they’ll need somewhere quiet to go for themselves, and that will be our home,’ she said.

Case 2

John and Helen are a couple in their early 60s. Of late, he had presented with poor short-term memory, and mood changes. Preliminary evaluation in general practice led to a likely differential diagnosis of early onset dementia.  There were two relatives on his side of the family who had a diagnosis of dementia, and both John and Helen therefore had previous direct experience of the impact and process of dementia. 

In the months awaiting closer evaluation in the hospital setting, they were both presented with a copy of Think Ahead at the practice by their GP, who advised them that this was a tool which was being increasingly used by patients in the practice who were over 60, and especially if they had any important medical conditions. On reviewing them several weeks later, it was clear that they had both completed ‘Think Ahead.’ They had updated their wills, and both of them had discussed and written down details regarding the preferences for their funerals. While still shouldering the uncertainty regarding John’s differential diagnosis, they both felt that the exercise of completing Think Ahead had been worthwhile, and they now feel generally better prepared. John was clear that should a diagnosis of dementia be confirmed, that he would not wish to be actively resuscitated should be become seriously unwell in the years ahead, and this was noted as part of his general practice record.

Key conclusions

‘Think Ahead’ is a useful and largely acceptable tool which many patients have now found useful, and especially when presented in the general practice setting. It is not a perfect tool, and may not be appropriate for every patient. However, as GPs we are largely good at tailoring options for individual patients, and given our strength in communication, we are adept at discussing and communicating on complex medical matters, and especially so where the discussion can be guided and informed by an effective tool. 

Results from ongoing studies on Think Ahead will become available in the coming months. The Irish Hospice Foundation is closely considering a scaled down version of Think Ahead for individuals who may have impaired cognitive function, intellectual disability or limited language or literacy difficulties, and particularly suited for completion with their main non professional carer. 

If you would like to understand more about ‘Think Ahead, or have a local or regional CPD session in your area, you can contact The Irish Hospice Foundation on Tel: 01 679 3188 or www.hospicefoundation.ie. A session can be organised to detail and present ‘Think Ahead’ to practice teams, at clinical meetings or faculty meetings by contacting Sarah Murphy at The Irish Hospice Foundation, Email: sarah.murphy@hospicefoundation.ie 

References

1. Weafer JA. Irish attitudes to death, dying and bereavement 2004-2014. Irish Hospice Foundation 2014.
2. B O’Shea, D Martin, B Brennan et al. Are We Ready to “Think Ahead”? Acceptability Study Using an Innovative End of Life Planning Tool. Ir Med J 2014 May;107(5):138-40)
3. Supportive and Palliative Care Indicators Tool (SPICT) www.spict.org.uk