A straight answer, please, on critical health question

Surveys show older people want straight answers to one of life’s weightiest questions.

A straight answer, please, on critical health question

“Doctor, how much longer do I have left to live?”

Two new surveys show older people want a straight answer to one of life’s weightiest questions, but clinicians are often reluctant to give one.

The research, led by Associate Professor Magnolia Cardona of Bond University and Gold Coast University Hospital, reveals older Australians want the truth about their prognosis, even if it is bad news.

Doctors and health professionals, meanwhile, generally prefer to be cautious due to uncertainty around life expectancy and pressure from families asking them to withhold information from terminally ill patients. There is also a perception that patients and families lack the knowledge to make informed decisions.

“While this may have been the case 15 years ago, our recent findings strongly suggest that the public today may be more willing than clinicians realise to talk openly about what is in store and how or where they want to die,” said Dr Cardona, of the Centre for Research in Evidence-Based Practice at Bond University.

Researchers conducted concurrent surveys of 497 members of the public, mostly aged 60 and over as well as with 360 Australian nurses and doctors dealing regularly with patients near the end of life, who might be in aged care, palliative care or emergency departments.

More than 92 per cent of older people wanted information about life expectancy, while almost 90 per cent wanted to be involved in treatment decisions if the likelihood of death was high.

Almost 60 per cent of clinicians said they were highly confident of initiating end-of-life conversations and more than 55 per cent regularly engaged in them. But almost 44 per cent said uncertainty about life expectancy was a barrier to the fateful chat, while 45 per cent reported being deterred by family requests to withhold information from patients.

“Arguments that patients cannot handle bad news, and that caregivers request the withholding of discussions about death with terminal patients for fear of distress, may need to be reconsidered in light of this research,” Dr Cardona said.

“There is a changing tendency for wanting more disclosure and shared decision-making.”

Dr Cardona said to minimise this difference of opinion with clinicians, the public also had a responsibility to question certain treatments, ask for further information and assist treatment teams by speaking early to their families and GP about their personal values and preferences.

This would ensure directives for care at the end of life could be completed before patients were unable to make choices for themselves.

Dr Cardona said people could download an advance care directive from their local health department website and put their wishes in writing.

The authors of the study, which included staff from the University of New South Wales and Liverpool and Concord Hospitals in New South Wales, recommended policies to ensure supportive environments for end-of-life discussions, as clinicians lack time to hold these sensitive conversations in routine practice.

Another suggestion was to offer communications training for less experienced clinicians treating terminal older patients, as the proportion of ageing patients in hospitals keeps growing.

Study co-author and nurse Ebony Lewis, of the School of Public Health and Community Medicine at the University of NSW, acknowledged that some patients and relatives were ambivalent or reluctant to discuss poor prognoses.

But she said medical literature and this recent study showed the culture of “doctor knows best” was changing and shared decision-making near the end of life “should become the norm”.

The study was published in the Australasian Journal on Ageing.

Have you had experience of a doctor giving a less-than-blunt assessment of your health? What would you prefer?

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    COMMENTS

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    Kosmo
    9th May 2019
    10:12am
    What we want is. Not Bull just tell us exactly what’s happening and what is the best solution! And don’t treat us like we have reach the expired date!
    Elizzy
    10th May 2019
    1:54am
    Agree, Kosmo. I'm in the process of writing my end of life wishes re treatment I will or will not accept, etc. Sometimes, though with doctors you have to grill them to make them speak with you honestly. I want the truth and nothing but the truth - as far as medical science is able to provide it.
    Hardworker
    9th May 2019
    10:57am
    While I haven't been in this situation personally I have witnessed others in this situation. Doctors are reluctant to estimate how long a person has left to live as in a lot of cases individuals have lived a lot longer than predicted. Personally I think it is better to know the facts no matter how bad they are so that one can be mentally, physically and financially prepared. It puts the necessary pressure on you to ensure your paperwork (Will) is watertight. You may also decide to spend more time with family and to clean out/give away unnecessary stuff that may be a burden on the family left behind. It's all very well to fight it and try to stay positive but one also needs to be realistic. I have witnessed some very unrealistic expectations. There is no point in putting your head in the sand. Everything on this planet dies eventually, nothing lives forever. It is however, important the way the message is delivered and I do believe all doctors need appropriate training for this.
    KB
    9th May 2019
    11:03am
    Younger doctors are very blunt and to the point. Had this scenario with one of my parents diagnosed with a terminal illness Elderly people must be treated with care and respect
    Hardworker
    9th May 2019
    11:24am
    Not just younger doctors I fear KB. It probably depends on their personality, training and experience. I have just read "Being Mortal" Medicine and What Matters in the End by Atul Gawande. Among other things he is a surgeon at Brigham and Women's Hospital in Boston, a staff writer for The New Yorker, and a professor at Harvard Medical School and the Harvard T.H. Chan School of Public Health. He is the author of three other bestselling books and makes some very good points in this particular book about the ageing process, treatment, care of the sick and elderly and the way messages are delivered. A very good read.
    KB
    9th May 2019
    11:03am
    Younger doctors are very blunt and to the point. Had this scenario with one of my parents diagnosed with a terminal illness Elderly people must be treated with care and respect
    Poppysmum
    9th May 2019
    12:16pm
    I would want to know the diagnosis, the prognosis and the truth. I would be very disappointed if any members of my family tried to hide the facts from me..I was under the impression that a doctor could not discuss my situation with anyone unless I gave them permission. Of course, if I was comatose, that is a different matter.....but I have already done all the legal work to keep me comfortable....but let me go.
    patti
    9th May 2019
    3:04pm
    Ditto, Kosmo. I also want to be spoken to like a sensible adult, not as if I am a doddery old person who cannot understand what's happening. And if I want to know why something is happening, just tell me. And please LISTEN to me, and hear my concerns. They are real. My pain is real. It's happening to me, and it's my body. I deserve to be treated with respect.
    Charlie
    9th May 2019
    5:21pm
    Life expectancy?
    Lets just organize whats going to happen in the next 2 hours and make it predictable.
    That's before the next shift kicks in.

    Lets inform nurses and doctors about the levels of opioid drugs taken every day by self medicating patients on long term scripts....So patients are not treated like drug addicts when they ask for the same medication to be supplied when they are in hospital.
    HDRider
    10th May 2019
    10:14pm
    Is a very clever person who predicts when you will die, and a very foolish one! Unless ie you are riddled with cancer or some other hideous deadly disease.
    I for instance have MDS and no chance of a transplant, so I asked my doc how long I might have? The answer is simple enough, as long as my bone marrow doesn't deteriorate I could have tears, if it deteriorates I might have weeks.
    The fact is, as we grow older we MUST have a current will in place updated every two years. You could be killed crossing the road tomorrow hey?
    A doctor will advise the possible scenarios, they cannot say with any accuracy how long you have, yeah yeah, we all have rights but they are not clairvoyants people. Also, if they did say you'll be dead by morning and your not you and our your family just might sue them think about that!
    Now ask yourselves, 'would I do it' I'd I were a doctor?
    Just saying


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