It is in our nature and training to find a cure, but one of the first things that must be accepted in palliative and end-of-life care is that we are moving beyond cure, and beyond having answers or indeed treatments for everything. We are moving into areas of increasing uncertainty, which we can find uncomfortable.
However, it is important to remember that, with advances in treatments, many patients will live for longer with their conditions. The ethos of palliative care is about enabling our patients to make the most of their lives. In other words, not just 'put days into their lives, but life into their days.'
Review and reassessment
The complexity of conditions and needs of palliative care patients is such that regular review and reassessment is essential to optimise their quality of life. With the majority of patients preferring to be cared for in their own homes, this presents challenges, especi-ally in the advanced stages of a disease.
Towards the end of life, with their symptoms progressing and sometimes changing on a daily basis, this review and reassessment becomes increasingly vital. There may be only one opportunity to make sure the patient's care is as good as possible.
Nevertheless, with sufficient planning ahead, attention to detail, and an effective multidisciplinary team, optimal care can be achieved.
Good, honest communication with patients and their carers is of upmost importance. A fundamental element is listening attentively, as well as using language that is understandable.
You will often be involved in discussing disease progression and prognosis which can be difficult.
Bad news is always a shock and can be very painful for all involved.
There is no universal 'right' way of giving bad news, but certain things can make it more bearable. For example, it is important to identify, through the patient's verbal and non- verbal cues, how much they actually want to know.
For patients in their own home, there may be carers by their side whose need for support must also be considered.
The scope of palliative care moves beyond cancer to include non-cancer conditions, such as end-stage heart failure and motor neurone disease. While it is vital to keep abreast of medical developments, it is also important to recognise that knowledge in many fields is often incomplete.
We must also remember that our patients are individuals with their own expectations and wishes. Attention to emotional, social and spiritual aspects is crucial, and by offering choice and information, we are helping to give peace of mind.
We should never underestimate the therapeutic value of the patient maintaining control over their life for as long as possible. Therapy is often about so much more than drug therapy.
Providing appropriate information, as well as medication, is of vital importance.
You and your patient
As a GP, you are uniquely placed in your patient's life. Relationships will often be built up over many years, and it is to you that your patients often turn to for advice and information.
It is with this invaluable knowledge and insight that you are able to be sensitive to apparently minor changes in a patient's condition.
This is so valuable when you are leading the palliative care of your patients, and supports the delivery of high quality patient-centred care throughout this critical phase.
However, we must acknowledge the particular pressures arising from the demands for you to be there to offer medical and emotional support during a patient's palliative care.
In this context, to be faced with the death of a patient can be very difficult for a GP, and it is at this point that we often become aware of our shared humanity, experiencing the feelings of loss and grief.
It is important to take care of ourselves, to make sure we are supported, not just physically, but emotionally and spiritually. Palliative care is very challenging, so personal resources need to be replenished.
How this is achieved is very individual, but I am helped, firstly by recognising and acc-epting that I cannot be all things to all people and, secondly, by being part of a team.
When running seminars for GP registrars on palliative care, I emphasise the importance of sharing the load, and multidisciplinary team work. As a GP, this can include seeking advice and support from a local hospice or other specialist palliative care service.
By doing so, you are not only sharing in the latest palliative care methods to enhance the care of your patient, but you are creating a support network in which to share the burdens, as well as the rewarding and satisfying elements of palliative care.
End-of-life care is most certainly not all doom and gloom. Most importantly, our roles are to help our patients to be comfortable and at peace with themselves and to make the most of their time left with their family and friends.
Looking after palliative care patients can be one of the most rewarding, but also humbling, roles we undertake as doctors.
- Dr Fletcher is the medical director for North Devon Hospice
- This topic falls under section 12 of the RCGP curriculum 'Care of people with cancer and palliative care'