Consulting with young people who self-harm
Mr Smith has lung cancer and has had a variety of treatments over the past few months which have failed to halt its progress. He comes in with his wife today to tell you the oncologist has told them is nothing else left to try, and that
his treatment will now be purely
palliative. He says he has come to terms with dying, but is worried about what sort of help he and his wife can expect.
Dr Melanie Wynne-Jones discusses.
How should you respond?
There are several tasks to achieve in this consultation. The first is to check what Mr and Mrs Smith know about his illness and its likely course, and how each of them is feeling. Rather than assume that they have identical knowledge and concerns, it may be better to ask if you can speak to each of them separately; loving family (and less-loving) family members are sometimes economical with the truth for the best (or worst) of reasons.
The second is to find out what they expect or fear will happen, answering questions honestly (including saying when you don't know).
The third is to establish or cement a helping relationship; the family will need to turn regularly to you for help from now on.
The fourth is to explain that you are a part of an experienced team with a wide range of skills that will support them over the coming months.
Why is the role of the GP changing?
Many GPs say the care of terminally-ill and dying patients is one of the most rewarding parts of their work, but GPs cannot and should not be the only source of support.
Palliative care has become a specialty in its own right. Few GPs can maintain the same level of expertise as doctors and other health professionals who provide such care every day.
Medical care and supporting the patient and the family are only part of palliative care; many other people can make unique and essential contributions: the NHS Plan1, the NHS Cancer Plan2, Cancer Services Collaborative3, recent NICE guidance4 and the end of life initiative5 are driving new ways of providing cancer services.
Changes in the way GPs work, including advanced access and the out-of-hours opt-out are reducing continuity of care, making teamwork even more important.
Who may be involved in palliative care?
·The traditional primary health care team: GPs, practice and district nurses, health care assistants, receptionists
·District-based commununity services physiotherapists, occupational therapists, nurse practitioners specialising in tissue viability, infection control, stoma care or continence promotion, chiropodists, dietitians, the community mental health team, social services, interpreters, benefits advisers
·Local and regional cancer units
·Palliative care physicians, palliative care teams and other outreach services often based in or linked to
·Hospices, which may also provide advice on pain relief, complementary therapies or day hospital and respite care
·Macmillan Cancer Relief their 'good practice guide' for primary care cancer services6 has been launched this month for GPs, primary health care teams, PCTs and local cancer networks.
·Local and national voluntary agencies such as CancerBACUP7
In the past, palliative care services have varied between districts, from basic to excellent. The government has set up 34 Cancer Networks in England (three in Wales) to develop integrated care, improve clinical outcomes, provide cost-effective services, improve the experience of patients and carers, and secure equity of service provision.
What are cancer networks' responsibilities?
·Co-ordination of care: a unified approach including up-to-date service directories of local self-help and
·peer-to-peer support groups, user groups and advocacy groups, information services, psychological support, social support, spiritual care, specialist palliative care, rehabilitation, complementary therapies, services for families and carers and local and national telephone helplines
·User involvement: patients, carers and practitioners; training and support
·Provision of information
·Psychological support: referral criteria for specialist psychological support services
·Social support: also community equipment services for people with cancer
·General palliative care, including care of dying patients: protocols/guideline development for symptom control, palliative interventions and care of dying patients
·Specialist palliative care: guidelines, protocols and care pathways for assessment, referral, treatment and care
·Rehabilitation: assessment tools and rehabilitation strategy
·Complementary therapies: where appropriate
·Support for families and carers, including bereavement care.
In addition, they must work with the Workforce Development Steering Groups to plan and provide skills training for professional groups that contribute to supportive and palliative care, specifically in relation to patients', families' and carers' information needs and preferences, psychological, social and spiritual care, rehabilitation and cultural diversity needs.
What does this mean for the GP?
In common with PCTs, practices are now expected to have a cancer lead. This person (who need not be a GP) will ensure that practice members:
·Have the necessary skills to conduct assessments and meet needs in partnership with patients and carers
·Document accurately patients' identified needs
·Make necessary referrals to other services
·Communicate with other members of the multidisciplinary team
·Have the necessary education and training, and ongoing support and supervision to meet the needs of patients and carers under their care.
Most practices have been doing this for years anyway, but they will now be expected to document and audit their activities. (This will provide useful material for individual GPs' appraisal folders, so make sure you keep copies where you have been involved). The MacMillan Cancer Relief 'good practice guide' contains templates and a self-assessment toolkit.
What will this mean for Mr Smith and other patients?
With luck, improved levels of care, support and information. The GP's role will continue to be one of diagnostician, provider of treatment and support, and co-ordinator of care, but it is clear that other members of the team will increasingly have superior skills in some areas, plus more time and resources to utilise them.
Good communication between team members will clearly be crucial. The challenge for GPs will be to adapt to working in new teams, while continuing to provide the personalised care that patients like Mr and Mrs Smith still rate so highly.
·The GPs' role in co-ordinating palliative care is changing
·The NHS intends to improve all aspects of cancer services
·PCTs are responsible for setting and monitoring standards in cancer care
·GP practices should have a cancer lead who oversees practice
·GPs will need to reconcile personalised care with new types of team working
Resources & References
Websites accessed August 29, 2004
1. Department of Health (2000) The NHS Plan www.dh.gov.uk/assetRoot/04/05/57/83/04055783.pdf
2. Department of Health (2000) The NHS Cancer Plan. www.dh.gov.uk/assetRoot/04/01/45/13/04014513.pdf
3. Cancer Services Collaborative www.modern.nhs.uk/scripts/default.asp?site_id=26&id=7050
4. National Institute for Clinical Excellence (2004). Supportive and palliative care for people with cancer: Part A and Part B. The Manual: www.nice.org.uk/pdf/csgspmanual.pdf
5. Department of Health (2004) End of Life Initiative. www.dh.gov.uk/assetRoot/04/08/49/12/04084912.pdf
6. Macmillan Cancer Relief/NHS Modernisation Agency 'Good Practice Guide' for Primary Care Cancer Services (August 2004) for GPs, primary health care teams, PCTs and local cancer networks. www.modern.nhs.uk/cancer/5628/7050/16600/24030/24206/
7. Cancer BACUP online www.cancerbacup.org.uk
Melanie Wynne-Jones is a GP in Marple, Cheshire