Bad news? Focus on the person

Heres an example of someone who knows how to focus on the person. Social worker with a SAGE client. Image from bwhheartandscience

If we focus on the person, rather than their diagnosis or any specific intervention, this can turn the idea of ‘bad news conversations’ (almost!) upside down.

When so many doctors find talking about bad news so difficult, just saying that we need to be more open doesn’t really help. Especially when many patients and their families simply collude in avoiding talking about bad news.

There’s a big worry that being explicit ‘removes hope’ and so just upsets patient and their families.

So Ariadne Labs asked “Why don’t these [bad news] conversations happen?” and “What can we do to make sure they do?” They identified the things that get in the way. Based on this, they created a systematic, multistep intervention, called SAGE. This even includes practice for the doctors with trained actors standing in as patients.

Usually doctors ask about treatment options: Do you want this?  Or do you want that? Ariadne’s very different approach has a strong focus on the person. It starts with asking patients if it’s OK to ask. This is like the ‘I’ for ‘invitation’ in the SPIKES model I already discussed.

It underlines that while we can hope for the best, we should prepare for the worst.

And is also clear that (because they do all this early!) no decisions are necessary today. The specific questions start with asking and listening. Always, the key is to focus on the person. They ask:

What is your understanding now of where you are with your illness?

Of course, anyone using this method should look through the whole thing. But I wanted to pick out some great questions that follow on from here (even if they are perhaps in American med-speak). With each of them there is a focus on the person:

  • If your health situation worsens, what are your most important goals?

  • What are your biggest fears and worries about the future with your health?

  • What abilities are so critical to your life that you can’t imagine living without them?

  • If you become sicker, how much are you willing to go through for the possibility of gaining more time?

Reaching an understanding about these sorts of things helps doctors to properly understand what patients might want in the uncertain, ever-shifting times ahead.

SAGE launched their program in primary care, because they “guessed that doctors’ long-term and trusting relationships with their patients would ease these conversations.” Following the training, almost three quarters of more than 200 primary care patients identified with serious and complex illness had useful and detailed conversations.

But Ariadne discovered early on that primary care missed out on a lot of people. A review of more than 350 deaths found that half of the most complex of these had been “cycling between the hospital, nursing homes and other care facilities” rather than being seen in primary care. So they decided to look at hospital conversations as well. They recognised that they needed to design a program specifically for inpatient clinicians – the doctors and nurses who manage patients once they arrive at the hospital.

The challenge was that “traditionally, end-of-life conversations within hospitals focus on medical procedures rather than more nuanced discussions about the patients’ goals and wishes.”

Hospital staff needed help “not only in identifying patients with whom they should have these challenging conversations, but in the specifics of the conversation itself. They also needed support to ensure rapid follow up with patients, families and primary care teams after the patient left the hospital.” The SAGE Programme arranged for social workers to share the information from the hospital discussions with primary and community care staff. And to act as a steady contact after discharge. This all allowed the clinicians to focus on the person.

A pilot study found that 100% of patient in the SAGE programme had detailed and clearly documented conversations about goals and priorities compared with just 40% of patients in the usual care group. Other positive data has been presented at scientific conferences.

Perhaps most importantly “having the conversation lowered patients’ anxiety, and patients reported that their hopefulness remained steady, while their sense of control over medical decisions increased.”

The fuller report of this work includes a story about “a patient we’ll call Evelyn”. This elegant 81-year-old lady had advanced dementia, so had been in hospital four times in eight months. “Before Evelyn started with the SAGE program, her devoted daughter had advocated for any treatment that might keep her mother alive longer. After careful discussions between Evelyn’s clinicians and the family that focused on Evelyn’s personality, sources of enjoyment, and known life priorities, as well as the trajectory of her illness, the family shifted the goals of her care from quantity of life to quality. Evelyn was content and comfortable in her final months, spending time with family, listening to music, and eating foods she enjoyed, rather than returning to the unfamiliar and restrictive environment of the hospital. Her daughter later reflected on the pivotal role of these discussions in helping to plan better for what lay ahead – in order to honour the things that were most important to Evelyn in her final months.”

Death plans and the law

Cartoon with a bedside family telling a doctor they havent discussed resuscitation preferences

The idea of ‘death plans’ may seem less commonplace than the birth plans produced in so many pregnancies. But at least some aspects of death plans can be legally binding. As always with anything legal, the devil in the detail. And the wording can feel confusing.

I’m shortly going to meet a midwife and I know we will talk about birth plans. Here, then, is a version of something I wrote for Pulse.

Lawyers and doctors don’t talk about death plans – but ‘advance directives’. Advance directives include Advance Statements and Advance Decisions.

Advance Statements are not legally binding, but should always be considered by medical staff

In contrast, Advance Decisions to refuse treatment are legally binding and MUST be followed by medical staff, IF they are valid and applicable. As discussed below, that’s a big IF.

If an Advance Decision refers to potentially life-sustaining treatment, it must must be witnessed, signed and dated.

The details are the big thing here:

  • If the patient didn’t fully understand the consequences of their decision, the clinicians caring for them might conclude the Advance Decision is not valid. There’s lots of room for condescension here!
  • If the patient did or said anything that contradicts the Advance Decision, it might not be considered valid. For example, a patient might have said they wanted comfort measures, rather than trying for a cure, but then accepted antibiotics for a urine infection. This would probably help with symptoms (comfort), but is it really aiming at a cure?
  • If the patient did not anticipate this exact clinical situation within this illness trajectory (how fast or slow the person is getting sick / well) the clinicians might decide the Advance Decision is not applicable. This is another get-out situation: who can anticipate everything?

Advance Decisions are probably most useful for refusing specific interventions like CPR or ventilation and so-called ‘life support’ machines. (I’ve written ‘so-called’ here, as sometimes – just sometimes – all the machines don’t actually support life, but just drag out deaths.)

Even if all the details above are OK, it’s important that Advance Decisions are kept up to date. It’s a good idea to review, re-sign and re-date them whenever clinical and other circumstances change, or every two years if everything is stable. This is so that the doctors treating the patient can be confident that they are following their current wishes.

If you want to set up an Advance Decision, the free My Decisions website https://mydecisions.org.uk will take you through some questions and scenarios to get you thinking about what’s important to you. At the end it will generate a legal document.

A lasting power of attorney (LPA) can be set up by an individual (the ‘donor’) to give an agreed Attorney the legal power to make decisions on behalf of that ‘donor’.

LPA can apply to property and financial affairs; or to health and welfare; or both, if both are set up:

  • In an LPA for health and welfare, a person must specify whether their attorney can make decisions about life-sustaining treatment on their behalf.
  • LPA for health and welfare only come into effect when the patient no longer has capacity to make their own decisions, while financial LPA can start whenever the ‘donor’ chooses.
  • For LPA, there needs to have been full discussion between a patient and their attorney, to truly know what the patient would want.

More details about LPA, including about the £110 fee (unless the donor is on certain benefits or earns less than £12000 a year) is at https://www.gov.uk/power-of-attorney/

Advance Statements are general statements about anything that is important to someone in relation to their future treatment and wellbeing.

They are sometimes called a Statement of Wishes, and are really more Life Plans than Death Plans. They can be used to detail any values or beliefs that inform your decisions or to express preferences for care (for example, hospital or home, male or female carers, specific religious preferences, shower or bath, Aunt Jemima or no Aunt Jemima .. down to Marmite or no Marmite). They are used only when you cant speak for yourself. If you have what’s called ‘capacity’ — the ability to make and communicate decisions — your expressed wishes come first.

None of these instruments gives anyone the right to demand any specific treatments.

Any individual with capacity can set up any or all of these methods of advance care planning. You can have an Advance Directive to refuse something, and an Advance Statement to say you would (or wouldn’t) like something else.

With all these imponderables, for all these ‘instruments’, the discussions may often be even more important than any individual document.

That’s especially true if the process and results are written down. Even if they are initially difficult, explicit discussions mean that families and loved ones know what a patient wants. This is often not what others think, even with close and loving relationships. For example, I have LPA for my mum, and although she said she was sure I knew her well, when I insisted on a discussion, I was really surprised by some of the things she said she didn’t want! These discussions can be much more about Life Plans than Death Plans.

People’s circumstances vary. However, the Alzheimers Society suggest that individuals and families consider LPA after a dementia diagnosis, and to do sooner whilst the person has capacity. This is something GPs can also encourage.

Want help? Online or downloadable Advance Decision and also Advance Statement forms and guidance are here, and there is a freephone information line at 0800 999 2434.