WHAT makes for a “good death”? This question seems to have been up for increased discussion in recent years as the medical profession and its regulators consider issues surrounding end-of-life care more carefully.
Updated guidance from the General Medical Council emphasises the need for high quality treatment, compassion and dignity, while making decisions that are clinically complex and often emotionally distressing. For patients, the ability to control pain, to understand what can be expected and to have a choice over where death occurs have also been identifi ed as important factors.
Palliative medicine specialists play an important role in providing care for patients with complex physical, psychological, social and spiritual support issues. However, the majority of care for those nearing the end of their lives is provided by other clinicians , with 40 per cent of all UK deaths occurring under the care of GPs, at home or in care homes.
A GP with an “average list” of 2,000 patients will have 20 die each year, but that figure rises for practices with a high number of elderly patients. GPs looking after residential and nursing home patients will also be providing palliative care for large numbers of patients in the GP practice setting.
While the number of GPwSIs in palliative care remains relatively small, the field is expanding and opportunities look set to increase.
Entry and training
GPs looking to develop a special interest in palliative care will need to undertake further training, taking into account prior learning and experience. Options include:
- Working under the supervision of a palliative medicine consultant in community/hospice/hospital setting
- Attending recognised meetings and lectures/tutorials
- Undertaking a recognised university course leading to diploma/masters in palliative medicine
- Working in palliative care during a GP vocational training programme.
Most GPwSIs will also undertake accredited communication skills training such as the advanced communication skills training run by the National Cancer Action Team.
The RCGP identifies the skills for a GPwSI palliative care to include:
- Clinical management and symptom control of patients with cancer and non-cancer end stage illnesses
- Provision and monitoring of drug therapies for symptom control
- Managing emergencies in palliative care
- Care in the dying phase/final days of life
- Communicating with patients nearing the end of life and their carers/ families
- Support and bereavement care for carers/families
- Provision of care for the elderly in care homes, including those with cognitive impairment/dementia
- Adequate knowledge of the Mental Capacity Act and other relevant health law
- Knowledge of organisations and access to services related to palliative care in-hours and out-of-hours (OOH)
- Knowledge of strategy, policies and tools related to end-of-life care
- Management, leadership and audit skills.
GPwSIs must be sensitive to the particular needs of their vulnerable patient group and, as the GMC guidance states, ensure patient dignity is maintained at all times. An ability to work within a multidisciplinary team is also key, as well as tactfulness and a willingness to respond to crises at short notice.
GPwSIs will usually have regular appraisals with a local consultant in palliative medicine, which often includes case note reviews, observed clinical practice, logbooks of patients seen and a portfolio of educational events attended or led.
When it comes to the final days and hours of life (in response to the removal of the Liverpool Care Pathway for the Dying), the Leadership Alliance for the Care of Dying People has identified five key principles for doctors working in palliative medicine:
- The possibility that a person may die within the next few days or hours is recognised and communicated clearly.
- Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
- The needs of families and others identifi ed as important to the dying person are actively explored, respected and met as far as possible.
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.
The majority of GPwSIs in palliative care work in hospices, although some also work in community teams. Hospice work generally involves taking part in the admission and management of hospice inpatients (usually under consultant supervision) and off ering advice to medical and nursing staff in hospitals/the community. GPwSIs may also review patients in the day hospice and hospice outpatients as well as during home visits. Some provide care out-of-hours.
GPwSIs may provide direct clinical care to patients and/or offer advice on management and they often work with a number of local primary care teams to deliver palliative care services. They may provide specialist medicines management support for patients and their carers, including end-of-life symptom control. The role often requires liaison with the OOH service, commissioners, cancer networks and other practitioners to ensure best practice is in place on primary care service delivery.
For those interested in becoming a GPwSI, the first step would usually be to meet with their local hospice or hospital palliative medicine consultant and to talk with their CCG/health board end-of-life care lead.
Dr Stephen Barclay is a lecturer at the University of Cambridge’s Primary Care Unit
- The Association for Palliative Medicine of Great Britain and Ireland (APM)
- RCGP’s Guidance and competences for the provision of services using practitioners with a special interest – Palliative care
- Leadership Alliance – One chance to get it right
Q&A Dr David Plume, GPwSI palliative care and cancer, and Macmillan GP adviser
What attracted you to a career as a GPwSI palliative care?
During my VTS I was lucky enough to do a six-month palliative care/oncology job, rather than general medicine. I wanted to be a GP and thought this would be a great way to improve my communication and clinical skills. I then secured a “special interest extension” and for a year I split my time between palliative medicine (running clinics, ward rounds, audit and education etc) and a local training practice. After several years as a full-time GP, I became on our local inpatient specialist palliative care team, with local third-sector and educational providers and CCGs. I teach primary healthcare teams, community generalist colleagues and AHPs and run my own palliative care course for GPs.
What do you enjoy most about the job?
Palliative care is a vibrant specialty which shares common underpinning skills with general practice. It feeds my intellectual and social curiosity and requires me to wrestle on a regular basis with complex ethical and legal issues. I work with intelligent, nonhierarchic, caring and supportive colleagues with impeccable communication skills and I feel part of a specialised team where the skills and experience I bring are equally valued. I also get to see people at one of the most difficult and potentially traumatic times in their lives, and hopefully I can do something to improve it.
Are there any downsides?
There can be a sense that one’s clinical autonomy is reduced when you are working with a team of training grade colleagues and a consultant. If you only do a limited number of sessions some of your skills can atrophy relatively quickly. It is important to get this role properly appraised annually, which is more paperwork and refl ective thinking. It can be difficult to transition from the holistic “as long as it takes” consultations in palliative care, back to the 10 minute GP consultations. Working as a staff grade in palliative care also pays less than a third of what I would earn for a GP session.
What do you find most challenging?
It can be easy to “benchmark” myself against my consultant and FT colleagues, even though they are far more experienced. It can be diffi cult to see the impact of your decisions if you are only on the ward once a week (and sometimes people can be too nice to tell you that you got it wrong). If you work as a GPwSI in an inpatient unit then having to swap out of on-calls to take a holiday can be a problem.
What about the role has most surprised you?
How genuinely interested palliative care colleagues are to get a GP perspective. How tired I feel after a day of walking around and crouching rather than sitting in my comfortable office chair. How much I continue to learn from my colleagues.
What is your most memorable experience so far?
A man with intractable pain and physical symptoms came in for symptom control and had a “secret” he wouldn’t tell us about his home life. His pain was so severe he needed large doses of oxycodone and sedation; he was agitated and distressed and was heading for a potentially horrible death. Eventually he told a colleague that his wife had been having an aff air and threatened to leave him if he complained. Once we helped him address this, his pain decreased substantially, his sedatives and anxiolytics were ceased and he had a comfortable week (with his sons around him) before a calm and settled death. This was a really striking example of the impact of spiritual, emotional and psychological distress on pain.
What advice would you give to a trainee GP considering a career as a GPwSI palliative care?
Developing a special interest is a great way of balancing out the stress of primary care, and I believe working as a GPwSI has made me a better and more focused GP. Spend some time with your palliative care colleagues, in an inpatient unit, in the community and in out-patients. Talk to your local team and see what is available. They can also advise about training courses.