Working with doctors Working for patients

 

Introduction

A few weeks into the chemotherapy, Mr Hartley has returned to see Dr Singh to review his regular medication.

(The story so far...)

Mr Hartley, who has early stage Alzheimer's, has been diagnosed with a malignant stomach ulcer which requires a gastrectomy and a course of chemotherapy.

Dr Singh

Dr Singh

I'm very pleased with the progress you've made since the operation. I hope that attending hospital for the chemotherapy sessions isn't too traumatic for you - I'm aware that you don't like hospitals.

Mr Hartley

Mr Hartley

They're awful places. People go there for something simple and end up dead. That's what happened to my Jeanie. She'd still be with me now if she hadn't had to go in for a broken hip and then caught pneumonia. Still, I guess I've been lucky so far this time. I'm not quite ready to shuffle off this mortal coil just yet. But once my mind goes, I don't want to be kept alive on all those machines - I mean, what would be the point?

Dr Singh

Dr Singh

Perhaps this would be a good time to have a talk about what you'd want to happen if something like this should happen again. As your condition progresses you might be less able to make decisions for yourself - is there someone in particular you'd like to make those sorts of decisions for you?

Mr Hartley

Mr Hartley

Well now that's a good question...now who would it be...? Well probably not Clemmy anyway, bless her. She does her best but we've never really seen eye to eye. There is my son, Robert, but I don't see as much of him as I'd like. Still I think he'd be best placed to know what I'd want, not just go along with every option available to medical science like Clemmy. Yes I'd like him to decide - could you write his name down please, Dr Singh?

What should the doctor do...? (Select A,B or C)

A

Make a note of what Mr Hartley has said, but suggest that he considers the issues further and perhaps comes back with his son or daughter to discuss the options again at a later date?

B

Inform Mr Hartley that if he wants to make a formal advance directive and appoint someone to make decisions for him, that he should contact his lawyer, or speak to the Office of the Public Guardian?

C

Tell Mr Hartley that he will make a note in his records but would not be able to guarantee that the instruction will be followed in every circumstance?

Dr Singh

See what the doctor did

Dr Singh gave Mr Hartley some written material about advance care planning to help him think about what he might want to happen if he should lose capacity to make decisions about his healthcare. These included leaflets on appointing a proxy decision-maker, and making decisions to refuse treatment in advance. Dr Singh suggested that Mr Hartley consider involving his children in thinking about the options, and that he come back to the surgery in a week's time - either alone or with one of them - to talk through the issues further. Dr Singh made a note of the discussion in the records, and the fact that Mr Hartley had said he would like his son to make decisions for him, but emphasised to Mr Hartley that this was the beginning of a process of discussion rather than an end in itself.

References

32. For some patients, there are foreseeable circumstances when they will have a choice of options at a time when they might find it more difficult to make decisions - for example because:

a. they may be in pain, confused or afraid
b. their capacity or insight may be impaired by their condition or the effects of an intervention
c. a decision may need to be made quickly so there will be less time for dialogue.

33. You should anticipate such circumstances and discuss them with patients in advance if practical, so that when a decision needs to be made patients have already had time and opportunity to consider the relevant information (see paragraph 10). Discussing a risk of serious harm will be easier to do in advance than in a time-pressured situation when the patient might be in pain, confused or afraid, and the mention of potential serious harm for the first time could be distressing.

34. Discussing options in advance doesn't remove the need to have a further dialogue immediately before providing treatment, and at regular intervals as treatment or care progresses. Even if there's a care plan in place, or the patient's made an advance decision, you should still talk to them about the options available in case the options have changed or the patient has changed their mind.

35. If a patient has a condition that is likely to impair their capacity as it progresses, you should sensitively encourage them to think about what they might want to happen if they become unable to make healthcare decisions. You should bear in mind that some patients may not be ready to talk about these issues. Such discussions might include:

a. the patient's wishes and fears, their preferences about future options for care, and the values and priorities that influence their decision making
b. any treatment or care the patient might want to refuse, and in what circumstances
c. any interventions that might become necessary in an emergency, such as cardiopulmonary resuscitation (CPR)
d. whether the patient would like anyone else - relatives, friends, carers or representatives - to be involved in decisions about their care.

36. A patient may want to nominate someone to make decisions on their behalf if they lose capacity or they may want to make an advance statement about refusing or requesting a particular treatment. In these circumstances, you should let patients know that there are ways to formalise their wishes and suggest that they seek support and independent advice about this.

37. You must record a summary of your discussion with the patient about their future care and any decisions they make, including as much detail as practical about the patient's wishes and fears, their preferences about future options for care, and the values and priorities that influence their decision making. If possible, you should make this record while the patient has capacity to review and understand it.

38. You should make sure the record of this discussion is flagged and made available to the patient and others involved in their care, so everyone is clear about what has been agreed. Any decision or preference should be easy to access and regularly reviewed.

39. If you are giving treatment or care to a patient who is nearing the end of their life, you must follow the guidance in Treatment and care towards the end of life: decision making.
(Decision making and consent, paragraphs 32-39)

24. You should consider using visual or other explanatory aids to support patients to understand their personalised risk, taking account of their individual clinical and personal circumstances, compared with population level risk.

27. Patients need relevant information to be shared in a way they can understand and retain, so they can use it to make a decision. To help patients understand and retain relevant information you should:

a. share it in a place and at a time when they are most likely to understand and retain it
b. anticipate whether they are likely to find any of it distressing and, if so, be considerate when sharing it
c. accommodate a patient's wishes if they would like to record the discussion
d. accommodate a patient's wishes if they would like anyone else - a relative, partner, friend, carer or advocate - to be involved in discussions and/or help them make decisions
e. use an interpreter or translation1 service if they have difficulty understanding spoken English
f. share it in a format they prefer - written, audio, translated, pictures or other media or methods
g. give them time and opportunity to consider it before and after making a decision.

28. You should be alert to signs that patients may need support to understand and retain the relevant information, use it to make a decision, or communicate that decision to you.
(Decision making and consent, paragraphs 24, 27-28)