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Principles of palliative care
Consultant, Palliative Medicine Northern Ireland Hospice, Belfast, UK
E-mail: alimaxuk{at}yahoo.com
Each GP with an ‘average’ list will have 20 patients who die every year. Five of those deaths will be from cancer, two will be from a sudden unexpected cause and the remaining 13 will result from chronic disease such as dementia, heart failure or chronic lung disease. Most GPs have one or two patients with terminal disease at any time, although these patients often require a disproportionate amount of GP involvement. On average, 47 weeks of the final year of life are spent at home. It is a sad fact that although most patients spend their final year of life at home and would prefer to die at home, the majority are admitted to a hospital or institution to die.
Helping patients to die with dignity and with minimal distress has been one of the most fundamental aspects of medicine, and over the past 50 years, specialist palliative care services have increasingly worked with general practice to develop more advanced knowledge and skill than ever before. Most GPs testify to this as being one of the more difficult, but most satisfying, parts of their job. Studies of patients and their carers have repeatedly shown that many terminally ill patients prefer the option of a death at home. Curriculum statement 12 ‘Care of People with Cancer and Palliative Care’ is the key curriculum statement relating to palliative care. In relation to palliative care, a GP should be able to:
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The GP curriculum and...
What is palliative care? |
What is palliative care? |
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Palliative care starts when the emphasis changes from curing the patient and prolonging life to relieving symptoms and maintaining well-being or ‘quality of life’. The World Health Organization defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ Palliative care:
- provides relief from pain and other distressing symptoms,
- affirms life and regards dying as a normal process,
- intends neither to hasten nor postpone death,
- focuses on enhancing quality of life, but may also positively influence the course of illness (though is not primarily concerned with producing long-term remission),
- is person oriented, not disease-oriented,
- is holistic in nature,
- integrates the psychological and spiritual aspects of patient care,
- offers a support system to help patients live as actively as possible until death,
- offers a support system to help the family cope during the patient's illness and in their own bereavement and
- uses a multidisciplinary team approach to address the needs of patients and their families.
Palliative care can be used in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiotherapy. It should dovetail into the ongoing active treatment of the patient's illness in the later stages of disease (Fig. 1). It should not be withheld until all treatment alternatives for the underlying disease have been exhausted.
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The role of the GP |
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GPs and the primary care team have always been, and will continue to be, the main providers of palliative care for most patients but we often find palliative care difficult. Even when specialist palliative care services are involved, GPs of patients receiving palliative care in the community are always team members—and often ‘the key’ to quality, co-ordinated care. Common concerns include the following:
- Not knowing enough about controlling symptoms
- Being reluctant to use powerful drugs in effective doses
- Worrying about the time commitment involved
- Being afraid to expose oneself to painful emotions.
| Box 1.Additional qualifications in palliative care available for GPs Princess Alice Certificate in Essential Palliative Care—8-week course held every 6 months at sites across the UK. The course is endorsed by the Gold Standards Framework. Further information is available from Tel. 01372 461845, E-mail: education{at}pah.org.uk, website: www.pah.org.uk/education/education_certificate.php Cardiff University Diploma/MSc in Palliative Medicine—further information is available from website: www.palliumwales.co.uk Keele University MA/Postgraduate Diploma in the Ethics of Cancer and Palliative Care—further information is available from website: www.keele.ac.uk/depts/pk/courses/CPC/ Newcastle University Certificate, Diploma and MSc in Oncology and Palliative Care—further information is available from website: www.ncl.ac.uk/postgraduate/taught/subjects/taught-bbsmd/courses/23 Napier University Certificate, Diploma and MSc in Palliative Care—further information is available from website: www.napier.ac.uk/postgraduate/default.asp
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Problems encountered |
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Problems arising in palliative care are a complex mix of physical, psychological and social factors involving both patients and carers (Fig. 2). Try to become familiar with a patient's disease even if it is rare. Keep up to date with hospital investigations and treatment. It is impossible to plan care without the knowledge of course and prognosis, and an easy way to lose a patient's confidence, if you appear ignorant of their condition, or the point in their illness that they have reached.
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To respond adequately, maintain an open door policy and encourage patients and carers to seek help for problems early. Symptom control must be tailored to the needs of the individual. The basic rules of symptom control are as follows:
- Carefully diagnose the cause of the symptom
- Explain the symptom to the patient
- Discuss treatment options
- Set realistic goals
- Anticipate likely problems
- Review regularly
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Palliative care consultations |
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Wherever possible, meet the patient face-to-face. Avoid telephone discussions except for brief advice or when face-to-face meetings are not possible (e.g. if the patient is away and wants advice). Ensure privacy—turn your mobile phone off if possible and ask reception staff not to interrupt. Allow enough time and, wherever possible, ensure that the patient has a family member or friend with him/her for support. Always sit at the same level as the patient. Use trained interpreters if the patient does not have sufficient English to communicate freely.
Interview style
Problems are more likely to be detected if the doctor:
- Gives good eye contact from the start
- Clarifies the presenting complaints
- Moves from open-ended to more closed questions
- Frequently makes empathic remarks
- Is sensitive to verbal cues to emotional problems
- Is sensitive to non-verbal cues
- Avoids reading, making written notes or computer entries
- Has strategies to keep the consultation focused
Background information
Start by introducing the discussion: ‘We need to talk about your illness, the problems you have now and what we want to aim for’. Then find out what the patient and his/her family understand: ‘Tell me what you know about your illness’. Next ask what they expect: ‘What do you think is going to happen with your illness in the future?’ and/or ‘What do you want us to do for you?’
Explore the current problems
When exploring the patients’ and carers’ problems, use open questions at the start becoming directive when necessary—listen, clarify, reflect and facilitate. Examine the patient as directed by the history. Consider:
- Physical symptoms—’Do you have any pain or discomfort?’; ‘Are there any other symptoms that bother you?’
- Psychological and/or spiritual symptoms—’How are you coping in yourself?’
- Social well-being—’How are you coping at home?’; ‘What do you do in the day?’; ‘Do you need any help around the house?’
- Well-being of the rest of the family
Planning appropriate care
Summarize the history back to the patient and give an opportunity for the patient to fill in any gaps. Draw up a problem list with the patient and carer. Discuss possibilities for treatment. It can be useful to use a checklist to ensure that all aspects of care have been covered:
- Can physical symptoms be improved?
- Can the psychological symptoms be improved (including self-esteem)?
- Can spiritual symptoms be improved?
- Can functioning within the home be improved? (aids and adaptations within the home, extra help)
- Can functioning in the community be improved? (mobility outside the home, work, social activities)
- Can the patient's or carer's financial state be improved? (benefits)
- Does the carer/family need more support? (voluntary and self-help organizations, extra help, sitting service, respite care, counselling)
Outline a management plan with the patient with provision that it could be modified should circumstances change. Shared decision making between patient and doctor improves concordance and patient satisfaction as well as clinical outcome. Set a review date.
Sharing medical information
Give patients as much, or as little, information as they choose to receive—if you are unsure, ask them how much information they want. Share information in a sympathetic way—not abruptly or bluntly—and give information in a manner the patient can understand. Speak clearly and avoid medical jargon and euphemisms. Ask patients to repeat back what they understand to ensure that their understanding is correct. Respond kindly to emotional outbursts.
Discussing prognosis
Avoid giving precise prognoses. Explain the uncertainty in estimating prognosis but give a realistic time range as this enables the patient to deal with their affairs and attend to family relationships.
Discussing referral to the palliative care services
Patients have very variable experience of palliative care services. Some are terrified of referral as they see hospices as places to die and referral means to them that they are going to die—and soon. Others have more positive views of palliative care—either through past experience when such services have been involved with friends or relatives or because they have been involved in the hospice movement themselves, for example as volunteers.
Introduce the possibility of referral to palliative care service when it becomes clear that the patient is suffering from an incurable and progressive disease that will eventually lead to death, and gauge the patient's reaction. Discuss palliative care in the context of how it can help the patient achieve his/her goals. Stress that palliative care is about living as well as possible for as long as possible.
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Out of hours care |
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The GP surgery is not open for around 75% of every week. Patients in the terminal stages of their diseases may be inappropriately treated in the out-of-hours periods by doctors or nurses unfamiliar with their case and plan of care. This can result in inappropriate treatment, inappropriate hospital admissions and even inappropriate resuscitation attempts.
Anticipation and communication are the keys to preventing this from happening. Communicate with patients and carers about what might go wrong, what to do if it does and who to contact. Patient-held records kept in the patient's home and containing a clear and up-to-date plan of care can help ensure anyone unfamiliar with the patient follows the planned course of action. Leaving ‘just in case’ boxes of drugs in a patient's home, complete with nurse authorization forms, may be appropriate in some cases.
Liaison with out-of-hours providers is also important. Hand over palliative care patients to the local out-of-hours providers and provide a plan of care. Liaise with out-of-hours providers to ensure that a stock of appropriate drugs is available to those working for them to use for palliative care patients. Inform local ambulance services as well as out-of-hours providers about decisions not to resuscitate a patient. For those requiring admission, or admitted inappropriately, liaise with secondary care services to ensure rapid discharge home.
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The Gold Standards Framework |
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The aim of the Gold Standards Framework (GSF) is to develop a locally based system to improve and optimize the organization and quality of care for patients and their carers in the last year of life both in primary care and in care homes. It consists of three basic processes as follows:
- To identify patients in need of palliative/supportive care towards the end of life
- To assess their needs, symptoms, preferences and any issues important to them
- To plan care around patient's needs and preferences and enable these to be fulfilled, in particular support patients to live and die where they choose
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Palliative care in the quality and outcomes framework |
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A total of six quality and outcomes framework (QOF) points out of a total of 1000 are available for palliative care for patients of over 18 years of age (Table 1). In order to achieve these points, practices must maintain a register of all patients in need of palliative care or support (palliative care 1) and review all those on the register at a multidisciplinary meeting at least every 3 months (palliative care 2). The practice reports the number of patients on its palliative care register and submits written evidence to the Primary Care Organization describing the system for initiating and recording review meetings.
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Criteria for inclusion on the register are broad. Include patients if:
- Their death in the next 12 months can be reasonably predicted and/or
- They have clinical indicators of need for palliative care that are prognostic clinical indicators of advanced or irreversible disease and contain one core and one disease-specific indicator and/or
- They are the subject of a DS1500 form (this can be issued if a patient is suffering from a progressive disease and is not expected to survive longer than 6 months for the purposes of claiming Disability Living Allowance or Attendance Allowance—which are then awarded immediately at highest rate without the need for further assessment)
Core predictors of the need for palliative care are:
- Multiple co-morbidities
- More than 10% weight loss over 6 months
- General physical decline
- Serum albumin of less than 25 g/l
- Reducing performance status or Karnofsky score of less than 50% (Box 2) or dependence in most activities of daily living.
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Box 2. The Karnofsky score 
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Key points
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References |
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Doyle D, Woodruff R. The IAHPC Manual of Palliative Care (2nd Edition). (2004) IAHPC Press, Houston, Texas. Available from: www.hospicecare.com/manual/IAHPCmanual.htm [date last accessed 14.02.2008].
Guidance on Prognostic Indicators. Available from: www.goldstandardsframework.nhs.uk/content/gp_contract/Prognostic%20Indicators%20Guidance%20Paper%20v%2025.pdf [date last accessed 14.02.2008].
Hospice information. Available from: www.hospiceinformation.info/ [date last accessed 14.02.2008].
Kenyon Z. Palliative care in general practice. BMJ (1995) 311:888–9.
NHS Employers. Quality Outcomes Framework. Available from: www.nhsemployers.org/pay-conditions/primary-890.cfm [date last accessed 14.02.2008].
NHS End of Life Care Programme. Available from: www.endoflifecare.nhs.uk/eolc [date last accessed 14.02.2008].
NICE. Improving Supportive and Palliative Care for Adults with Cancer (2004) Available from: www.nice.org.uk/nicemedia/pdf/csgspmanual.pdf [date last accessed 14.02.2008].
Palliative Care Matters. Available from: www.pallcare.info and www.book.pallcare.info [date last accessed 14.02.2008].
RCGP. The GP Curriculum—Statement 12: Care of People with Cancer and Palliative Care. Available from: www.rcgp-urriculum.org.uk/PDF/curr_12_Cancer_and_palliative_care.pdf [date last accessed 14.02.2008].
The Gold Standards Framework. Available from: www.goldstandardsframework.nhs.uk/ [date last accessed 14.02.2008].
Watson M, Lucas C, Hoy A, Back I. Oxford Handbook of Palliative Care (2005) Oxford: Oxford University Press.
Watson M, O'Reilly K, Simon C. Oxford General Practice Library: Pain and Palliation. Oxford: Oxford University Press. (in press).
WHO. Definition of Palliative Care. Available from: www.who.int/cancer/palliative/definition/en/ [date last accessed 14.02.2008].
Woodruff R. Palliative Medicine (2004) 4th edition. Oxford: Oxford University Press.
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