Do Mention the D Word 

Siobhan Harris

Disclosures

March 04, 2019

Doctors sometimes find it hard to talk to their patients about death. There are many reasons why it may be a struggle, not least because it can be a difficult and sensitive conversation to have.

A recent report by the Royal College of Physicians (RCP), 'Talking About Dying', suggested that doctors need to improve their conversations with patients with terminal illnesses or chronic conditions, to handle them in a more timely way and with more compassion and confidence.

So why is it such a difficult conversation?

Patient Reaction

Doctors may not be comfortable dealing with the reaction of the patient and their families.

People can have a myriad of responses; from shock and denial to feeling offended or being utterly bereft.

It can be challenging for a doctor to broach the subject, especially if they don't have a long-term doctor-patient relationship and are unaware of the specifics of the situation.

Some patients and their families may regard the conversation as an indication the medical profession is giving up on them.

Cultural differences can also be important with some nationalities, religions or ethnic groups being less comfortable with the concept of limiting treatment, stopping treatment or moving towards palliative care.

Practical Issues

Sometimes doctors don't know who is best placed to have the conversation. Hospital doctors may believe the difficult conversation should be with a GP who is going to have responsibility for the continuing care of the patient.

On some occasions, patients have to think about the issue before they are ready to do so and it can take them by surprise.

Recent key legal rulings mean that doctors now have to discuss resuscitation status with all patients who might be at even a small risk of having a cardiac arrest, which brings the question to the fore.

"Sometimes acute hospital doctors who have never met the person or their family are having the discussion for the very first time. There is also a growing focus on ResPECT [Recommended Summary Plan for Emergency Care and Treatment] forms for such decisions, which involve the patient more, and on 'treatment escalation plans' where we have to decide how far treatment would go if the person deteriorates," explains Professor David Oliver, the RCP's clinical vice president.

"Sometimes patients or their families welcome these discussions but sometimes they are taken by surprise. Also, in the busy acute hospital environment with a lack of privacy, a lack of detailed knowledge of the person before they came in and no established doctor-patient relationship, and because of competing time pressures, this is not always done well nor in a way the patient feels fully involved in," adds Prof Oliver.

Death Is a Failure?

Some doctors may regard death as a failure. It can sometimes be easier for doctors to continue treatment as it's what they have been taught to do.

"People with chronic disease frequently end up being admitted acutely to hospital, very often under a doctor who doesn’t know them. In these circumstances, it can be very difficult for doctors to initiate the difficult conversation. It’s much easier to continue treatments, no matter how futile, than it is to have such a conversation," says Dr Seamus O'Mahony, consultant gastroenterologist and author of The Way We Die Now

He adds: "Doctors very often opt for the easier option of continuing treatment: as the Australian palliative care physician Will Cairns observed: 'Two weeks in the ICU can save you 1 hour of difficult conversation'."

Don't Have the Skills

Doctors may feel they aren't adequately trained to have the conversation. It can be hard to teach the soft skills surrounding breaking bad news.

"The amount of time devoted to care towards the end of life, including specialist aspects of palliative care and difficult conversations about death and dying, is still variable and probably not sufficient to reflect the day to day realities of many doctors’ jobs once they have qualified and are in practice," says Prof Oliver.

"The junior doctors we spoke to as part of our report confirmed to us that they had not always had enough training around these tricky issues and so could feel at sea when faced with them in practice" he adds.

"Treating patients in the last year, weeks or days of their life is a major part of many doctors’ roles and it can’t all be delegated to specialists in palliative medicine. There is some training offered within many employing hospital trusts around issues like "do not resuscitate" decisions or breaking bad news and there is support not only from consultants supervising junior doctors but also from specialist nurse practitioners in palliative care or critical care. However, it is still quite variable," adds Prof Oliver.

It's Hard to Pinpoint Death

If a doctor does start a dialogue about end-of-life care, patients often ask how long they have left. Since a definitive prognosis is hard to pinpoint, doctors may avoid having the conversation at all.

"Predicting and recognising dying isn’t always an exact science, and people we were not expecting to die can do so. I think being clear that someone is dying or is at high risk of dying does happen, though it's not always done as well as it could be," says Prof Oliver.

"However, whilst there is growing focus on care planning, person-centred care and advance planning, we don’t do it enough of the time for enough people and we probably don’t do it as well for everyone as we should," he admits.

The Patient Might Not Want to Talk

It may not be the doctor who is reticent about bringing up the subject of end-of-life care and dying, it may be the patient and/or their relatives who want to avoid talking about it.

"It's really important that people get offered the chance to have the conversation and that families are involved too, but people should never be forced into it; it should never become a tick box exercise," explains Dr Catherine Millington-Sanders, end-of-life care lead at the Royal College of General Practitioners.

She says: "There should be a dialogue in their journey that goes at their pace. They should know you, as a GP, are there for them and know how you can support them along their journey.

"Some people just don't want to have the conversation: if you even come close to offering it there are communication blockers that you notice over time. Right up until the end some people don't want the conversation and it's our responsibility to respect that but some people change their mind. In that case you can pass the baton back to them saying 'You may not want to now, can we talk about it another time?'" advises Dr Millington-Sanders.

She says in her experience maybe 1 in 10 patients don't want the conversation.

Is It Good to Talk? 

The RCP report, which spoke to patients and carers, suggested that many people do want to talk about death, and planning for it helps patients feel more empowered about care and decision-making.

There's also anecdotal evidence that patients feel better after having a realistic conversation about what the future holds for them. It can help them adjust mentally to the concept of dying and gives them a chance to try to tie up loose ends and do and say the things they need to before they die.

For a patient with a long-term condition or terminal diagnosis, the earlier a doctor talks to them about possible consequences and what the future may hold, the better it tends to be.

"Many patients welcome the chance to talk about their current and future care needs, their priorities, their plans; they want to be involved in decisions about their own care. The same very much applies to the millions of family carers who help support people," says Prof Oliver.

Good Death

If there is no hope of treatments or interventions prolonging life or making a real change to a patient's condition, they will receive palliative care.

Palliative care is often seen as the last resort. The final step before death. The palliative care approach isn’t about giving up. It's about living the best life possible for the time remaining.

The focus can turn to giving the patient a good and dignified death, making them as comfortable as possible and controlling their symptoms as well as possible.

"Medicine needs to place care of the dying and the relief of suffering at the core of its mission," says Dr O'Mahony.

Advanced Care plans can be put in place, conversations can be had about what treatment will be or will not be carried out in the event of an acute event.

It can help the patient's family to know what to expect and to understand the wishes of their relative.

Linked-Up Care

End-of-life care involves many people, not just doctors.

"Patients only spend a small amount of time with GPs so it's important to link up conversations and dialogue, as it's not solely one clinician's responsibility. It's all about how you fit in with support networks like carers and families," says Dr Millington-Sanders. 

She adds: "People get a better experience if they know what they want and the professionals around them are clear. If you have better planned care there's evidence that you'll get a better experience. There's a lack of control about death and dying but planning for it in the best possible way, with everyone involved, is the best option."

It can be hard to talk honestly about death and dying. As a society death is often a taboo subject so it's not surprising there can be a reluctance to talk about it. Doctors though have to break down those barriers in order to give their patients the deaths they deserve.

We are an ageing population so having the appropriate, realistic conversations and getting care right at the end of life is going to become more and more relevant.

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