1. Identifying needs
Home is where patients spend most of their time and where most would prefer to die. However, current community provision can be inadequate, leading to patient and family distress, crises and unwanted admissions.
Achieving good home care is central to fulfilling patients’ wishes to remain at home and to die at home. Reliable home care reduces hospital admissions and costs but it requires planning, provision and a focus on co-ordinating care in the community.
Even greater challenges exist for the elderly population with multiple co-morbidities, complex needs and social issues.
A large number of elderly people live and die in care or nursing homes where end-of-life care and support can be inadequate.
The care of seriously ill patients towards the end of life is a fundamental and crucially important part of the GP’s role.
Practical care at home is generally less available for patients with non-cancer illnesses. However, the evidence shows that using good practice models, such as the Gold Standards Framework (GSF) for primary care and care homes in the UK improves home care.
The key factors in improving home care are early identification of patients nearing the final year or so of life and anticipating their likely needs.
To assist GPs in this process, the GSF team has published a guidance paper based on the ‘surprise’ question: Would you be surprised if
this patient were to die in the next year/month/week/day?
Since April 2006 the quality framework has included six points specifically for palliative care.
In total there are also 52 points available for cancer and other long-term conditions relevant to palliative care.
The GSF is now the recommended means of delivering high-quality palliative care in primary care and has the support of both NICE and the RCGP.
It is in use by more than a third of primary healthcare teams in England and Scotland, and level 1 of the GSF also forms the basis of the six palliative care quality framework points.
Practices may progress through four levels of adoption of the GSF, so that many build on level 1 to further extend and develop care.
Getting end-of-life care right, particularly care at home, is one of the greatest challenges in healthcare today.
The national End of Life Care Programme, being developed by the DoH, will be available towards the end of 2007 and in effect from 2008. See www.endoflifecare.nhs.uk for more information.
Improving quality of care
The GSF is a non-prescriptive means of improving the organisation and quality of care given to those in the last six to 12 months of life, to enable physicians to address their physical, psychological, social and spiritual needs.
The framework is broken down into seven manageable tasks, known as the seven C’s (see box). The aim is for patients to be symptom free, in their place of choice, and to feel safe and secure with fewer crises occurring.
If a patient has expressed a preference to die at home it is important that medication is prescribed in anticipation of this need and that the right drugs and a syringe driver are available if needed.
In the terminal phase, it may be useful to leave the following drugs in the house: diamorphine, or similar, for pain; midazolam for terminal agitation; anti-emetic such as haloperidol or cyclizine for nausea and hyoscine or glycopyrronium for secretions.
Many patients are given these drugs in a ‘just-in-case’ box. The GSF website describes this process in more detail.
Effective sharing of information between health professionals and between professionals and patients or carers is essential.
Various means can be employed, including handover forms, home packs, patient-held records and medication cards.
Good communication skills are also needed. Talking about death and dying can be difficult for professionals as well as for patients and their carers, but asking patients and noting where they would like to be cared for, and developing an advanced care plan, is recommended good practice.
Expressing these wishes at an early stage increases the chances they will be fulfilled.
Standards of care
The gold standards framework covers:
- Co-ordinator — a nominated person to manage the project.
- Control of symptoms.
- Co-ordination — with out-of-hours and specialist teams.
- Continued learning — through audit and targeted learning.
- Carer support — social services may help with this.
- Care of the dying.
3. Controlling symptoms
The symptoms that need to be addressed most commonly include fatigue, depression, pain, nausea and vomiting, constipation (often drug-induced) and dyspnoea.
Fatigue is the most common symptom for patients at the end of life. Suggest general measures and discuss the patient and carer expectations.
The aim should be to maximise functioning as far as possible; oral steroids may help and remember to exclude depression. Amphetamines may also be used.
Depression mimics other conditions seen in these patients and is under-diagnosed. The GP should maintain a high index of suspicion and treat as usual.
In addition to standard pain management following the WHO pain ladder (including use of morphine and other options), neuropathic pain unresponsive to opioids requires adjuvant therapy with valproate, amitriptyline, gabapentin or nerve blocks. Refer to a specialist if pain persists.
Nausea and vomiting
In nausea and vomiting diagnose the cause before treating appropriately. Drug-related nausea can be treated with haloperidol or levopromazine; nausea caused by pressure from a tumour with metoclopramide, hyoscine or cyclizine; if there is a central cause use cyclizine or dexamethasone; for reflux use metoclopramide or antacids and if it is related to anxiety treat with an anxiolytic.
It is helpful to use laxatives with increased opioids and to treat actively. The patient should be considered constipated until proved otherwise.
Hypercalcaemia presents with nausea, increasing pain, constipation and confusion. It is difficult to diagnose clinically but it is important to maintain a high index of suspicion and check calcium levels.
An adjusted calcium level above 2.8mmol/l may require referral for treatment with IV rehydration and pamidronate. In terminal agitation it is important to seek the cause, but midazolam should be given followed by reassessment in 15 minutes, but reassess opioids for possible toxicity.
Non-drug and anti-panic measures are useful in dyspnoea, as are small doses of oral morphine or anxiolytics.
Liver capsule pain can be managed using warmth, NSAIDs and steroids.
Squashed stomach syndrome causes partial obstruction and a sense of fullness due to pressure. The patient should switch to small liquid meals and may be treated with metoclopramide or dexamethasone.
Some patients with intestinal obstruction may be eligible for palliative surgery but others need medical management with metoclopramide, hyoscine butylbromide, haloperidol or octreotide.
Oral thrush and dry mouth are very common in the last months of life. Nystatin or fluconazole plus general mouthcare is useful.
Death rattle can be managed with hyoscine butylbromide subcutaneously or added to a syringe driver.
Overuse of steroids may cause cushingoid symptoms, diabetes, agitation, oral thrush, muscle wasting and bedsores.
In superior vena cava obstruction the patient should be given high dose steroids and referred urgently.
Spinal cord compression is an emergency. The patient should be given high dose oral steroids with a GI protector, and referred to an oncologist urgently.