16 The terminal phase

Death is not extinguishing the light; it is putting out the lamp because the dawn has come.

Rabindranath Tagore

Patients frequently ask, ‘How long have I got?’ It is notoriously difficult to predict when death will occur, and it is wise to avoid the trap of making a prediction or an incorrect guess. If pushed to do so, it should be made clear that any predictions are only a guide. It is best to talk in terms of ‘days’, or ‘weeks’ or ‘months’, as appropriate.

For example:

Patients may have expressed wishes regarding the manner and place of their death. A key factor to facilitating these wishes is for the health professional to know when the patient is dying. However, predicting when someone is going to die is infrequently simple and often complex, particularly when caring for a patient with a long-term chronic illness.

The clearest signs of approaching death are picked up by the day-by-day assessment of deterioration (Table 16.1).

Should such symptoms develop suddenly over a matter of days instead of the usual weeks, it is important to exclude a reversible cause of the deterioration such as infection, hypercalcaemia or adverse effects of medication changes.

Different religious and cultural groupings have divergent approaches to the dying process. It is important to be sensitive to their possible beliefs. If in doubt, ask a family member. Offence is more likely to be caused by not asking than by asking. ( see Chapter 10h Chaplaincy).

The process of dying is a very individual event. Helping to explore patients’ wishes about death and dying should, if possible, take place before final days of life are reached. Important discussions can still, however, take place even at this late phase and professionals should encourage this dialogue. The family gain great comfort in knowing that they have made the most of precious moments and that they have the answers to issues that are important to them. Some of these questions can include preferred place of death or burial/cremation and financial or ‘unfinished’ business issues. Time to say the last goodbyes to close family members, children and dependants and time to forgive and bury guilt can be crucial to enable a normal bereavement.

Effective terminal care needs a team approach. No single member of the palliative care team, no matter how committed or gifted, can meet all the palliative care needs of a patient and his/her family.

The focus of assessment in the last few days of life is to discover what, apart from dying itself, the patient is most concerned about and which concerns need to be addressed. Patients may under-report their symptoms which distress families. Although families may be very helpful in understanding non-verbal cues, in their own distress, they may also misinterpret and exaggerate the patient’s symptoms, which needs careful handling.

Common problems that need to be addressed are nausea, pain, oral problems, sleep disturbance, weakness, feeling confused (and sometimes hallucinating), pressure sores as well as the burden of having to take medication. Skilled nursing care can be crucial to ensuring that the patient’s comfort is maintained, e.g. using a pressure-relieving mattress to reduce the risk of pressure sores and the need for frequent turning; offering the patient a urinary catheter if they are too weak to get out of bed; and ensuring the mouth is kept clean and moist when nutrition and fluid input is reduced. Patients rarely worry about nutritional and fluid intake, but this may be a major concern for the family.

The key to psychological assessment is finding out what the patient wants to know in a sensitive and unhurried manner. Gently assessing how the patient feels about their disease and situation can shed light on their needs and distress (Table 16.2). How the patient interprets their disease and its symptoms may be a cause of suffering itself. However, deep probing at this stage is inappropriate as the goal is psychological comfort and peace, now.

Anxiety and agitation may need to be managed with medication. Patients are more often concerned about their family at this stage than about themselves.

( see p. xxxiv)

The palliative care team needs to have as a goal the maintenance of the patient’s dignity in a manner which is appropriate to that particular patient. What is dignified for one patient may not be for another, which is one of the reasons why many hospices have both single rooms and small wards.

Particular religious tasks may need to be accomplished, for instance absolution, confession or other forms of religious preparation. Spiritual disquiet or pain may be relieved by allowing the expression of feelings and thoughts, particularly of fear and loss of control. Patients are more often concerned about the family at this stage than about themselves and may need to address issues of unresolved conflict or guilt.

Families often want to know that the patient is comfortable and not suffering. If appropriate, it may be helpful for them to be aware of the experiences of people who have had near-death experiences, which are described as tranquil and peaceful. Many mechanisms have been used to explain this phenomenon, including the release of endorphins (natural analgesics), retinal hypoxia with resultant neuronal discharge (particularly in the fovea where there are many neurones) so that a bright spot looks like the end of an inviting tunnel. Temporal lobe seizures may also provide an explanation. Whatever the mechanism, nature seems to have a way of allowing dying people to feel comforted and at peace at the end.

Examination at this stage is kept to the minimum to avoid unnecessary distress. Examine:

Any investigation at the end of life should have a clear and justifiable purpose, such as excluding reversible conditions where treatment would make the patient more comfortable. There is little need for investigations in the terminal stages.

At this stage comfort is the priority. Unnecessary medication should be stopped but analgesics, antiemetics, anxiolytics/antipsychotics as well as anticonvulsants will need to be continued. If the patient is unable to swallow their essential medicines, an alternative route of administration is necessary. These changes needs to be explained to relatives, who may become anxious that tablets which the patient has had to take for years have now suddenly stopped ( see Management of diabetes p. 456–460).

Weakness in the last few days of life can result in an inability to clear respiratory secretions leading to noisy, moist breathing (death rattle). It occurs in 50% of dying patients and is caused by fluid pooling in the hypopharynx. This is often very distressing to family members, and should be treated prophylactically as it is easier to prevent secretions forming than removing those that have gathered in the upper airways or oropharynx.

General measures include re-positioning the patient and reassuring the relatives. Explain to the family that the noise is due to secretions collecting which are no longer being coughed or cleared as normal. They should also know that the secretions are not causing suffocation, choking or distress.

These specific guidelines are for patients who are imminently dying and develop ‘rattling’ or ‘bubbly’ breathing (the death rattle). The following guidelines should be used with caution, particularly if the patient is still aware enough to be distressed by the dry mouth that will result from treatment.

(Acute pulmonary oedema should be excluded, and treated with furosemide.)

NB Hyoscine hydrobromide can cause sedation and confusion.

If the patient is conscious, and their respiratory secretions are not too distressing, it may be adequate to use a transdermal patch (Scopaderm 1.5mg over three days or sublingual tablets (Kwells).

All potentially reversible causes of agitation (see the ‘Think list’ below) in the terminal phase should be excluded. A diagnosis of terminal agitation can only be made if reversible conditions are excluded or are failing to respond to treatment. If the patient is clearly distressed, some degree of sedation will probably be warranted. This decision should be discussed with the patient, if at all possible, and the family if they are also involved in the discussions.

‘Think list’ for some common reversible causes of terminal agitation:

Once any treatable causes of agitation have been excluded it is important to inform the family in attendance of your clinical findings, and of the management options, emphasizing clearly that the goals of treatment in this situation are primarily comfort and dignity.

If a syringe driver is unavailable, alternative phenothiazines or benzodiazepines may be given sublingually or rectally, e.g. chlorpromazine 25mg per rectum 4–6 hourly with escalation to response (up to 100–200mg 4h) and/or diazepam rectally 10mg p.r.n. or clonazepam sublingually 0.5mg and titrate upwards.

Sections detailing the last few days of life, practical issues and bereavement in this Handbook clearly outline good practice for the care of the dying. The Liverpool Integrated Care Pathway for the Dying Patient (LCP) aims to translate such best practice into a template of care to guide healthcare professionals with limited or infrequent experience of caring for dying patients. The LCP provides guidance on the different aspects of care required, including comfort measures, anticipatory prescribing of medicines and discontinuation of inappropriate interventions. In the UK the LCP is widely used within hospitals, hospices, care homes and the community setting.

There are three sections of the LCP for the dying patient:

Before a patient is commenced on the LCP it is important that the MDT has agreed that the patient is in the dying phase. This decision in itself can sometimes lead to conflict within the team, but it is important to make a clear diagnosis if appropriate care and communication is to be achieved.

In cancer patients, if the patient’s condition has been deteriorating over a period, i.e. the last weeks/days, and two of the following four criteria apply:

it is likely that the patient is entering the dying phase. These criteria may not be appropriate in a non-cancer population. It is important to highlight that a patient who is clinically in the dying phase may occasionally recover and stabilize for a time. However, this should not prevent the clinical team from using the LCP to provide the appropriate physical, psychological, social and spiritual care.

see Fig. 16.1

This section identifies the key goals that should be achieved when a patient enters the dying phase. These goals are directly related to and support the guidance referred to this chapter. A key component of the LCP is the supporting guidelines for the symptoms of pain, nausea/vomiting, agitation and respiratory tract secretions. These guidelines ensure that the appropriate oral medication is converted to a subcutaneous regimen and that patients have p.r.n. (as required) medication available should they require it.

In care settings where the LCP is not in common usage, healthcare professionals can use the goals of care in Fig. 16.1 to guide and inform their practice.

The LCP promotes multidisciplinary working and a joint approach to the care of the patient and their family. In caring for a dying patient, at least four-hourly observations of symptom control should be made, and the appropriate action taken if problems are identified. Particular attention is given to pain, agitation, respiratory tract secretions, nausea and vomiting, mouthcare and micturition problems. In addition, support regarding the psychological, social and spiritual aspects of care for both the family and the patient need to be continued in the dying phase.

The LCP incorporates the certification of death within the document, identifies any special needs for the patient who has died and support for the family and carers immediately after death. It particularly focuses on the information needs of the family at this distressing time.

In providing a template of care for the dying phase, the LCP promotes discussion within the clinical team with regard to the diagnosis of dying, and facilitates the initiation of care that is appropriate for the dying phase. The LCP integrates local and national guidelines into clinical practice. This powerful educational tool can be used to facilitate the role of specialist palliative care teams and to empower generic health workers to deliver a model of excellence for the care of the dying. Healthcare professionals also benefit by knowing that they have delivered a good standard of care to the patient. In the words of the National Cancer Plan ‘The care of all dying patients must be improved to the level of the best.’

Example of Chart in LCP - Initial Assessment.

The successes of the Liverpool Care Pathway (LCP) in the UK have led to considerations of its use further afield. As an example, this section details the development of an integrated care pathway for end-of-life care in India.

There are currently 100 palliative care physicians working in India, a country with a population of over one billion. Despite islands of high-quality palliative care, the national average for coverage of palliative care remains under 1%. With the burden of chronic diseases being increasingly shouldered by resource-poor countries, the development of comprehensive palliative care services is an imperative. Attempts to develop these services should focus on the provision of services in areas of unmet need, to measure and improve the quality of existing centres as well as the capabilities for training health professionals in palliative care.

One of the fundamental principles of an integrated care pathway is that it reflects locally determined best practice. Ownership is critical for the success of the LCP. Thus, a pathway developed in one setting cannot be exported and used in another, but must be redesigned to incorporate local needs. The process of the multidisciplinary team sitting together to determine their standards of best practice is integral to the success of the LCP.

The pathway was redesigned in an established centre of excellence by multidisciplinary focus groups ‘blind’ to the goals of the LCP. This produced a generic pathway for use in the Indian setting. The LCP Central Team UK recommend that the goals of care remain the same during the translation process and, therefore, were coded in sequence to enable the future benchmarking of LCP’s success across sector, organizations and countries. The LCP India fully complied with this process and was ratified by the LCP Central Team UK.

The pathway is now undergoing piloting in four centres around the country, after being adapted locally at each setting. These pilot centres cover a range of settings, from hospice and hospital to the community.

A comparison of the documentation pre- and post-implementation of the pathway shows improvement in almost all parameters, from anticipatory prescribing to the discussion of emotional issues with family members. Analysis of the improvement showed both an increase in documentation of care and in the care actually given.

A series of semi-structured interviews was conducted with the original focus group, six months after the introduction of the pathway. There has been a very positive reception to the project. Comments centred around five main themes:

‘The pathway means we have improved documentation of things like the patient’s address which has stopped a lot of confusion at the time of the death certificate. Generally, we can see what care we have given the patient over the past day. This was really needed.’

‘Emotional issues of the patient and family are a higher priority now we are using the pathway’

‘It allows us to tell the family what is happening directly and clearly’

‘The regular checking of symptoms is good and improves the interaction and relationship with the patients and relatives.’

‘If there is a new member of staff it is easy to teach them how best to care for the dying on the ward’

The concept of ‘variance’ has proved difficult to explain to staff. This has often led to the pathway being used as a set of guidelines rather than an integrated care pathway. New staff require training before using the pathway, which can take a significant amount of time. Staff members are reluctant to stop recording information in the original case sheet, leading to a duplication of documentation. Variance analysis must be undertaken by staff and this is an added burden for a busy team.

After completion of the four pilot projects in India generic documentation for each of the settings will be produced. A core team of national trainers will then be developed to allow training days to be run for new centres interested in using the pathway. The pathway will then be launched nationally and a formal evaluation will follow.