The decision-making process
The healthcare professional who will be taking the lead in a particular intervention should be the decision-maker. For example, if the decision concerns resuscitation, this should be the person who will make the final decision, usually the senior clinician according to local resuscitation policy and as recommended in the resuscitation guidelines.
An algorithm for this process is shown in Figure 1. First, the patient’s capacity must be assessed. If there is any doubt, or any concerns expressed by their representatives (for example, family or friends), it is wise to carry out the two-stage test, and good practice for a second professional to be present when this is done. The process should be accurately documented. If resuscitation will be futile for that patient, it should not be offered. Instead, the aims of the treatment and interventions that will be pursued should be explained to them.
If the patient has capacity, the discussion should be between them and the decision-maker. It is often the case that the family may try to take the lead in such discussions. Their aim is usually to try to protect the patient and in some cases, there may be extenuating circumstances to justify their intervention. But if the patient has capacity, they have a right to make the decision themselves and must be given the option to do this.
If the patient lacks capacity, evidence of ACP should be sought. This may be a lasting power of attorney for welfare decisions (LPAWD). It should be noted that any enduring power of attorney, or lasting power of attorney for finances and property, does not allow for medical decisions on behalf of the patient. If there is an LPAWD, the decision should be discussed with that person, remembering that they can only represent what they feel the patient would want in these circumstances.
Other sources of ACP may be an advance statement of wishes concerning end-of-life care. This represents evidence of what the patient would want in certain situations at the end of their life, if there is a choice. For example, they may state that they would want antibiotics. Even in such a case, antibiotics (or other specified treatment) should not be offered if inappropriate, and this also applies to CPR.
Advance decisions, the legal part of ACP, are a refusal of treatment in specific circumstances at the end of life. English law does not allow patients to demand futile treatments; this is why it refuses them.
If an advance decision exists, it must be followed except in specific circumstances. If not, the decision-maker could be held responsible for neglect. The specific circumstances apply if the patient’s behaviour has been contradictory to what they have refused in the advance decision, if they have made an LPAWD since writing the advance decision, if the advance decision is not properly witnessed or signed, or if it is not specific to the circumstances the patient is in at that time.
If no ACP exists, the decision-maker should discuss the decision with the patient’s representative. This should be somebody who is close to the patient, but does not have to be their next of kin or even a blood relative. Many people have friends who are closer to them than their family. They should represent what they think the patient would want.
If there are no patient representatives, or if there are several but they give conflicting information, help should be sought from the local independent mental capacity adviser (IMCA), who can take all of the information into account and make the decision, or from the Court of Protection.
Initiating discussions about end-of-life care
Discussing end-of-life decisions can be difficult, but this is something that all health and social care professionals should undertake. This will ensure that patients can have their choices taken into consideration. One of the models for breaking bad news7 can offer a good framework for such discussions.
Useful questions to put during the discussion include, ‘Should you deteriorate suddenly, do you know where you would like to be?’ and ‘As part of your care, there are some important things I would like to discuss with you in future. Would you like anybody to be with you when we have these discussions?’ Ask the patient how they see their future; this can be useful in obtaining their perception of their situation.
With sensitive handling, these discussions need not be insurmountably difficult, and if healthcare professionals do not feel able to conduct them, the patient may not have the chance to express their wishes.
Resuscitation decisions can be complicated, but if a framework is consistently followed for such discussions, including ACP, the process can be less confusing. It is important to have discussions about ACP before it is too late for the patient to have their say. There is only one chance to ensure that end-of-life care is carried out according to the patient’s wishes, so decision-making must be as effective as possible.
|Madeline Bass is head of education at St Nicholas Hospice Care, Bury St Edmunds, Suffolk. Competing interests: None declared|
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Originally published in the June 2009 edition of MIMS Oncology & Palliative Care.