Although surveys show that around three-quarters of terminally ill patients want to die at home, currently only about a quarter of them actually do so. However, with well co-ordinated palliative care management, primary care teams are well placed to improve these figures. Dr Edin Lakasing and Wendy Mahaffey review the different strategies for ensuring the dying patient’s wish to die at home is realised.
First published March 2006, updated May 2021
Palliative care is the proactive and holistic management of patients with a significant illness that cannot be cured. In most developed countries, approximately a third of deaths are due to cancer and another third are due to cardio-respiratory disease. Typical examples of illnesses in these categories are lung cancer (which is common to both), Chronic Obstructive Pulmonary Disease (COPD) and Congestive Cardiac Failure (CCF).
Patients’ attitudes to receiving a serious diagnosis are complex and variable. In a well known study, Hinton1 interviewed patients in the 10 weeks prior to their death. He found that while 66 per cent recognised death as a possibility, 26 per cent talked only of recovery. Another classic study, by Kübler-Ross2 , found certain common patterns among dying patients including initial denial, anger, bargaining (which includes a belief that medical therapy may help), depression and finally acceptance.
As only a minority of deaths are due to a sudden illness (e.g. acute fatal myocardial infarction) or trauma (e.g. a traffic accident), palliative care at home is an option for most patients at the end of their life. This article looks a the role of the Primary Healthcare Team (PHCT) in making this option more possible.
Role of the primary healthcare team
The key personnel within a PHCT are the General Practitioner (GP) and the practice nurse. Members of the PHCT will see patients at all stages of the illness – from the early stages when a terminal prognosis may be given (though the patient may be reasonably well in themselves at the time) to the patient’s death.
Assessing patients’ needs
The PHCT’s members are usually well placed to assess the patient’s (and their family’s) likely attitudes and wishes.
A needs assessment should be carried out soon after the terminal diagnosis. The precise format of the assessment will depend on individual circumstances and in practice, is likely to take the form of several discussions with the patient and carers (either face-to-face, by phone, or both). Continuity of care is valued and in practices that do not have personal lists, the patient’s usual doctor should co-ordinate care with another doctor as backup.
A vital part of assessing the patient’s wishes is finding out where they want to die. Research has shown that three-quarters of patients express a wish to die at home3 , but disappointingly less than a quarter currently do so4 .
The trend towards dying in hospital rather than at home is perhaps not surprising. Rising economic prosperity during the 20th century has occurred along with greater social fragmentation (evidenced by the loss of the extended family, a rising divorce rate and a secularisation of society), which has led to traditional support structures being eroded; therefore, the terminally ill patient does not always have the support they need at home to die there.
As well as these factors, primary care is probably underachieving in palliative care and this may have contributed to the large proportion of terminal ill patients whose wish to die at home isn’t realised. However, a concerted PHCT effort and willingness to use higher-technology healthcare in the home (for example, oxygen cylinders) could increase the number of patients who are able to die at home. In our practice (in Hertfordshire), using this approach has led to an increase from 30 per cent a decade ago to a current figure of just over 50 per cent5 .
Although the patient may want to die at home, caring for them is a daunting task for their carers. Even if home is the preferred place for the patient to die, both the carer and the patient should be reassured that admission to a hospice or a hospital can be arranged if needed.
Table 1 lists the common situations where terminal care at home is unsuitable. However, patients can still expect to spend a useful proportion of their final days at home even if death eventually occurs elsewhere, and the role of primary care is still invaluable.
Table 1. Situations where palliative care at home is unsuitable
- Poor or absent carer support
- Carers cannot cope
- Patient does not wish to be at home
- Distressing symptoms that cannot be managed, e.g. faecal incontinence
- Inadequate symptom control at home
- Acute emergencies, e.g. haematemesis, peritonitis > Inadequate health professional input.
Liaison with other agencies
Punctilious inter-professional liaison is essential. Regular meetings within the PHCT to review patients should occur. Electronic records and patient-held continuation cards in which all professionals involved can be make an entry in are invaluable. Most practices use an out-of-hours service and updates on significantly ill patients must be sent here as well as to nursing services that may expect to be involved in care. Arrangements with the local and on-call pharmacist are similarly important.
Many patients will be under hospital care and indeed the terminal diagnosis is often confirmed here; this is especially true in the case of cancer. The hospital may have a role in palliation even while the patient receives the bulk of care at home. For example, someone with oesophageal cancer having a stent inserted, or someone with lung cancer having palliative radiotherapy. Hospitals and GPs should keep each other informed of their involvement.
Many outside agencies may also be helpful to carers; this includes professionals who can help the PHCT. Macmillan nurses have specialist training in palliative care and, whilst they do not provide hands-on care, they are skilled in counselling, support and symptom control. Marie Curie is another charity that can be contacted via the district or community nurse. Previously committed to cancer only, Marie Curie have diversified to provide broader palliative care and many Primary Care Trusts (PCTs) have contracts with them; a particular advantage is that they can provide overnight nursing care.
There are equivalent agencies that work at local level. For example, the Iain Rennie Trust service has proved invaluable for our practice in the Hertfordshire and Chiltern area. Other professionals that may be involved include physiotherapists, social services and hospice-based palliative care teams.
The therapeutic options for the common symptoms in palliative care are discussed below. The list of symptoms is not exhaustive, and reference can be made to an excellent section in the British National Formulary6 .
Table 2. Common myths about opiates
- They are addictive
Rarely a problem if used for sound medical reasons. Pain appears to act as a ‘physiological antagonist’ to addiction
- They cause respiratory suppression
True, but less so in the presence of pain and hardly relevant in the dying patient
- They are only useful in cancer
No. Distressing symptoms in non-malignant illness, especially cardio-respiratory disease, end-stage renal failure and neurodegenerative disease may be helped by opiates despite relative lack of pain.
The degree of pain suffered is very variable and not surprisingly is much more likely, though not invariable, in cancer as opposed to non-malignant conditions. Analgesia is more effective when given regularly, and a wide variety of products may be used depending on the degree of pain and patient preference.
Mild-to-moderate pain may be managed with paracetamol or mild opioids such as co-codamol or co-dydramol. Tramadol is a useful alternative. When more severe, opiates should be used and morphine is the mainstay. This can be initially given as an oral solution, typical initiating doses being 10–20mg up to four times daily. Morphine has the advantage of quick onset and also that a calculation of requirement per day can be used when the switch to tablets is made. A useful regime is to use long-acting oral salts suitable for twice daily administration (e.g. MST continus) with oral solution as a top-up for breakthrough pain. Morphine can also be used rectally as suppositories.
An alternative to morphine is fentanyl given as a transdermal patch that is changed every 72- hours. Individual patches have their strengths labelled by micrograms per hour (25, 50, 75 and 100); each ‘25’ equates to around 90mg of morphine, and oral morphine can be useful for breakthrough pain.
Opiates are the mainstay of analgesia in significant pain and their euphoriant effect and dissociation from distress make them useful in terminal non-malignant disease even if pain is not a key feature, for example end-stage CCF. Reluctance to use opiates sufficiently is a frequent reason why patients are managed sub-optimally, and both patients and health professionals may harbour myths about this class of drug that ought to be dispelled. These are listed in Table 2.
Some types of pain require specific management. Bone is a frequent site for metastases, and nonsteroidal anti-inflammatory drugs (e.g. diclofenac 50mg up to tds) in addition to general analgesia management may be helpful for this particular type of pain. With neuropathic pain, for example in Pancoast’s syndrome when lung cancer invades the brachial plexus, a tricyclic antidepressant (e.g. amitriptyline) or gabapentin could ease pain; nerve blocks and transcutaneous electrical nerve stimulation may have value in localised areas.
For muscle spasms, diazepam or baclofen may be used. And with gastrointestinal pain, bowel colic due to partial obstruction may be alleviated by loperamide or hyoscine butylbromide; the latter may be given sublingually.
Nausea and vomiting
Nausea and vomiting are extremely common in cancer, and may be due to the direct effects of tumour or the side-effects of radiotherapy or drugs (particularly opiates). It is good practice to routinely use anti-emetics for the first five days with opiates and thereafter on a prn (as required) basis dictated by the symptoms. Choices are metoclopramide 10mg up to tds, haloperidol 1.5mg od, or cyclizine 50mg up to tds. Constipation is similarly often due to opioid analgesia and regular laxative use should be offered. Lactulose, codanthramer or senna are reasonable choices.
Breathlessness is a very common symptom as the potential causes are numerous: the patient may have terminal cardio-respiratory disease, a primary lung tumour or pulmonary metastases, or a contributory systemic problem such as anaemia. Oxygen can be safely given at home as long as nobody in the household smokes in the vicinity of the cylinder, and if continuous use is required a concentrator is more suitable. The usual oxygen cylinder is the size f (1360 litres), though for ambulant patients a portable (size dd) cylinder may be used when they venture outdoors. Diazepam and dexamethasone may also be used to relieve anxiety, as can opiates even in the absence of pain.
Another possible symptom is the excessive respiratory secretion or the ‘death rattle’. This is best managed with hyoscine hydrobromide given by subcutaneous injection at a dose of 400–600mg four to eight hourly.
Restlessness and confusion
Restlessness and confusion can also occur in the terminally ill patient. These symptoms may again be due to the direct effects of a tumour, medication side-effects or hypoxia. Haloperidol is a suitable choice but if more sedation is desirable, chlorpromazine 25–50mg to tds is preferable.
Insomnia may be treated with any recognised hypnotic such as temazepam; the risk of dependence is irrelevant in this clinical setting.
Pruritus or itching is often due to obstructive jaundice and emollients may help. Colestyramine can be useful and so can sedative antihistamines, e.g. promethazine 20mg od.
Convulsions are a risk in patients with secondary cerebral metastases or uraemia. Standard anticonvulsants such as phenytoin or carbamazepine usually suffice. When oral treatment is no longer feasible, rectal diazepam or subcutaneous phenobarbital may be used. In raised intracranial pressure due to cerebral oedema, dexamethasone at a dose of up to 16mg daily may be used.
Anorexia may be helped by corticosteroids e.g. prednisolone 15–30mg daily or dexamethasone 2–4mg daily. These drugs may also improve the patient’s mood.
Depression is common with any significant physical illness. Drug treatment should be offered as in any setting. Tricyclics, while generally less favoured than selective serotonin reuptake inhibitors, may confer some advantages in terminally ill patients due to sedation and beneficial effects in slowing nerve conduction. However, anti-muscarinic effects of dry mouth, constipation and urinary retention may exacerbate other common problems so the choice depends on individual circumstances.
Medication in the last stages
The parenteral route (the syringe driver) for delivering medication becomes necessary when oral treatment is no longer feasible. In practice this happens because of nausea, vomiting, bowel obstruction, extreme weakness or when the comatose stage is reached. Diamorphine is the preferred analgesic because of its high solubility. It is also the most potent analgesic, with each milligram equivalent to 3mg of morphine. Nausea and vomiting may be managed by haloperidol or methotrimeprazine, both of which can also help sedate the patient although the benzodiazepine midazolam may be necessary with significant distress; the latter is also suitable for treating convulsions.
Management of other health problems
Patients are likely to have other chronic illnesses that may be unrelated to their terminal illness, but may be modified by the latter. How these are treated is a matter or clinical common sense. For example, withdrawing thyroxine from a hypothyroid patient would be unhelpful, whilst stopping a statin would be a welcome reduction in the medication burden of a dying patient in whom lipid control is hardly a priority.
Three-quarters of people wish to die at home though currently only a quarter of deaths occur in this setting. Primary care has the potential to deliver high-quality domiciliary palliative care that could potentially increase the proportion of the population realising their wish. The key tenets to successful management are close liaison between the patient, their carers and other agencies, and effective use of the therapeutic armamentarium for symptomatic relief.
- Hinton J. Whom do dying patients tell? BMJ 1980; 281: 1328-30
- Kubler-Ross E. On death and dying. 1970; Tavistock Publications, London
- Karlsen S, Addington Hall J. How do cancer patients who die at home differ from cancer patients who die elsewhere? Palliative Medicine 1998; 12: 279-86
- Bosanquet N. New challenges for palliative care. BMJ 1997; 314: 1294
- Lakasing E, Mahaffey W. A practice based survey of mortality patterns and terminal care provision. British Journal of Community Nursing 2005; 10: 378–80
- British Medical Association / Royal Pharmaceutical Society of Great Britain. British National Formulary (BNF). BMA / RPS (twice yearly in March and September). London: BMA