VOL: 97, ISSUE: 03, PAGE NO: 36
Jane Eastland, BSc, RGN, DPSN, is specialist nurse in anticoagulation at Wansbeck General Hospital in Ashington, Northumberland
John Laurenson, MB, ChB, MRCP, FRCA, is consultant anaesthetics and lead clinician in ITU at Wansbeck General Hospital in Ashington, Northumberland;Sandra Latimer, RGN, was a senior staff nurse in ICU and is now transport coordinator, Newcastle upon Tyne Hopitals NHS Trust
Intensive care allows many patients to survive an otherwise rapid deterioration into fatal illness. But there is a group of patients admitted to intensive care who do not recover from acute illness and continue to deteriorate to a point where death is the only expected outcome.
There is also a group of patients who are admitted with an exacerbation of a chronic progressive illness, perhaps at a time when incomplete information is available on their pre-existing exercise tolerance and quality of life.
It may later become apparent that the pre-existing condition is so severe or progressively deteriorating that recovery to a tolerable level of health is not possible.
In such circumstances intensive care acts only to prolong patients’ suffering and demise and is not in their best interests. The withdrawal of life support is the correct course for both these groups of patients. Providing continued organ support is technically possible but becomes a matter of prolonging death rather than saving life. These patients are the focus of this article.
A decision to withdraw treatment is always difficult because it allows a patient to die earlier than if treatment was continued. It is the policy of our intensive care unit for this type of decision to be reached jointly by a senior nurse and two clinicians. One of those clinicians will be the consultant anaesthetist responsible for intensive care and the other may be the referring consultant physician or surgeon or a second intensive care consultant anaesthetist. Such a decision is recorded in the patient’s notes and signed by those taking responsibility for it.
What can these patients or their families and friends expect when there is an underlying feeling of failure or hope of recovery has gone? This area of clinical practice was explored in our ICU, where there was a passionate desire to ensure a continued, comprehensive level of care for the patient.
We devised a framework (see Box), the result of extensive discussions between two nurses and a consultant anaesthetist, and later between all intensive care consultants and departmental staff. We see the framework as a flexible tool that comprehensively addressed the needs of the patient in ICU while maintaining the generic, fundamental principles of caring for the dying in an acute care setting.
Caring for intubated and ventilated patients for whom treatment is considered futile is deeply emotive. ‘Terminal weaning’ is an expression that is often used by nursing and medical staff in the ICU. This represents the withdrawal of mechanical ventilation as vital signs deteriorate and the expected outcome is the death of the patient (Grenvik, 1983; Campbell, 1994). Another common term is simply ‘weaning’. Both terms, however, are associated with negative connotations of dependence and infantilism.
We decided to change our practice to distance our unit from the negative associations of terminal weaning, promoting instead a positive framework to support the dying patient. The concept of providing holistic care along the same caring/curing continuum is expressed in our shared values and beliefs as health professionals and underpins the unit’s philosophy.
Achieving flexibility and consensus
A small working group met at regular intervals to develop the framework. Initially a protocol arrangement similar to those implemented in other ICUs was discussed. This was rejected early on in the process in favour of a framework that aimed to be flexible, with the emphasis on individuality in maintaining a standard of care. Each element, such as pain relief and sedation, was explored at length by all ICU consultants and nursing staff. Consensus was considered of the utmost importance if a change in practice was to be achieved.
Our aim was to enable a dignified, peaceful, pain-free death. It was important to consider, therefore, the environment and spiritual or religious beliefs of each patient. This may seem an obvious inclusion in the plan of care, but open, busy, noisy ICUs may not offer the peace and privacy that patients and their families need.
Ending the conspiracy of silence
Communication is a vital element in the care of dying patients and their families (Horton, 1996; Robb, 1997; Fulbrook et al, 1999). Youll (1989) describes a ‘conspiracy of silence’ that often surrounds the dying patient and identifies the distancing tactics used by health professionals - consciously or not - to avoid confrontation. Horton (1996) describes silence during an approaching death as a ‘communication deficit’ in the care of the dying patient.
Nurses and medical staff need to make family and friends aware that the patient is dying, despite all efforts, so that they are prepared for the impending death and allowed to start grieving: ‘The more grief is expressed before death, the less unbearable it becomes afterwards’ (Kubler-Ross, 1969).
The role of patients’ relatives
Consent for treatment or the withdrawal of treatment can, in the case of a competent adult, be given only by the patient. If he or she is not competent as a result of illness or sedation, the next of kin cannot provide valid consent on behalf of the patient.
In the absence of an advance directive from the patient, drawn up while he or she was in a competent state, the team caring for the patient, the next of kin and other relatives would proceed to act in the patient’s best interests.
Most relatives agree with the assessment of the clinicians and nursing staff. Some need a significant period of time to come to terms with it and should be given an opportunity to question staff, reflect and spend time with the patient. Once they have accepted the situation it is appropriate to start the withdrawal of treatment, following our framework for the care of the dying patient.
Rarely, some or all of a group of relatives may take a different view from the clinicians and nursing staff and want treatment to continue. Withdrawing treatment in the face of such opposition is a problem. In such cases it is often helpful to continue with treatment to allow time for further discussions with senior intensive care nursing and medical staff and the referring consultant. This may resolve the situation.
If relatives still refuse to accept the withdrawal of treatment it is appropriate to continue to provide treatment until the expected demise occurs, provided that the patient is free of symptoms such as distress, pain and dyspnoea. To withdraw treatment in the face of relatives’ opposition would cause problems.
Withdrawing organ support
A dying patient’s life may be prolonged by organ support. This usually involves one or more of the following:
- Respiratory support;
- Cardiovascular support;
- Renal support.
Withdrawal of such support allows the patient to die. Complete withdrawal of the first two forms of support can, if the patient is heavily dependent on them, lead to a rapid death and be distressing for relatives. A gradual reduction may allow a more gentle decline, the aim being an unhurried but not overly prolonged death.
If the patient is not heavily dependent on respiratory or circulatory support death may not occur for a number of hours or even days and it is important to prepare relatives for this. The withdrawal of renal support is less immediate in its effect than the withdrawal of respiratory or cardiovascular support as substances such as potassium and urea take time to reach critical levels.
Withdrawing respiratory support
The aim is to return the patient to as ‘natural’ a state as possible - that is, to reduce respiratory intervention as much as possible. This involves the reduction of the fraction of inspired oxygen (FiO2) to 0.21 (that of room air) to allow spontaneous breathing, if possible with a minimum of pressure support - the removal of positive end expiratory pressure (PEEP) and continuous positive airway pressure (CPAP). If the patient is not able to breathe spontaneously, the ventilatory rate should also be reduced.
These changes can be made one by one to effect a gradual decline. It may be possible to reduce support to a level where the patient can breathe room air through a heat-moisture exchanger, allowing disconnection from the ventilator.
Many dying patients need to be sedated to relieve distress, often compromising airway maintenance and reflexes. The removal of an endotracheal tube or tracheostomy, while returning the patient to a more ‘natural’ state, risks death from respiratory obstruction. This is not acceptable and such devices should not usually be removed.
Withdrawing inotropic support
Inotrope and vasoconstrictor support should be reduced and withdrawn. The rate at which this is done and the patient’s dependence on such support will determine the rate of decline in his or her condition. Should a precipitate reduction in cardiovascular function be expected, it is helpful to wait until the patient’s relatives are present, should they wish to be, before doing this.
Withdrawing renal support
Haemofiltration can be discontinued or not recommenced.
Discontinuing unnecessary treatment
Antimicrobials and all other unnecessary treatment should be discontinued.
Providing symptom relief
The aim should be to provide relief from pain, anxiety, dyspnoea, thirst, hyperpyrexia or any other distressing symptom. This means the patient needs to be assessed regularly and symptom control provided.
Relief of pain and anxiety
Although pain and anxiety are issues that need to be addressed for the dying patient, some of the agents used may act to the patient’s detriment, for example, respiratory depression caused by opioids used for pain relief. It is illegal to administer such agents in large doses with the aim of causing death.
But it is also unacceptable to leave patients in distress. The rule should be to provide as much analgesia or sedation as is required for symptom control, even if the dose needed is more than that usually used in patients not receiving palliative care. This should be reviewed regularly.
Remember that a bolus dose achieves much faster symptom control than increasing an infusion rate. A higher hourly infusion rate may then be required to maintain the higher plasma level.
This issue is often forgotten, but it is easy to avoid dehydration by ensuring that adequate intravenous fluids are prescribed. It will usually be appropriate to discontinue enteral or parenteral feeding as death is usually expected within 24 hours.
Should it be delayed, by days or weeks, consideration will need to be given to continuing nutrition.
A number of measures are available to control high temperature. Paracetamol, tepid sponging, a fan and a cooling blanket may all be necessary, depending on the level of pyrexia. Excessively low temperature with shivering is less common and may require measures such as a heated air blanket or the warming of intravenous fluids.
Caring for the dying can be an emotional experience. When there is no hope of recovery, nurses may find themselves ill prepared to face the challenges that lie ahead in using a framework such as this. In helping nurses to equip themselves emotionally, our department has invested heavily in preceptorship and clinical supervision, supporting self-awareness through structured reflection. Within the framework, however, there is a subsection that respects the wishes of nurses who do not want to be involved.
The framework aims to be a simple, flexible tool that all health professionals can use when caring for a dying patient. Its table of considerations ensures that a standard, comprehensive approach supports the nurses and doctors who care for patients as well as the patient and his or her family.
We are considering whether or not to evaluate the tool. The framework does not lend itself to audit as it has been difficult to quantify how it improves patient care. Suggestions regarding a qualitative study that would include interviews or focus groups have been explored, and full discussion and clarification is planned.