What is wrong with you doctors?!

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You have six months to live but with aggressive treatment we can make it seem a lot longer.

With apologies to those lovely doctors out there who have been amazing,  life-saving,  special people, I am nevertheless daring to write this slightly critical blog page.  As I have served on both sides of the fence, the ‘Patient’ and the ‘Doctor,’ it is part apology and part complaint, so I don’t feel quite so bad.  I write it now because, whilst it has been nagging at me off and on since I became the patient, I have become even more worried as I have listened to stories from friends, acquaintances and strangers who have been handled in insensitive ways by their medical practitioners. Most of these people forgive and excuse those doctors on ground that they ‘are too busy’, ‘couldn’t have known’ or were ‘only following protocols’, but frankly this is just not good enough.

I do believe that doctors don’t realise the extent of their failing. It does seem to have worsened in recent times, but to blurt out  information from the head not the heart has always been a tendency. Even in my early days as I doctor, when appointment times weren’t so limited and decisions not driven by algorithm (therefore I had even less excuse), I was certainly not immune. It was, and still is, all to easy for doctors to do untold damage by their words. We don’t do it on purpose. But just because we do not realise the destructive power we possess, it does not meant we don’t need to realise it.

There can be no excuses. Yes, we (doctors) are bound by protocols and guidelines, yes, we are informed by ‘best practice’ (hmmm?), yes, we have to base our decisions on statistics and high-quality, published research, and yes, we are (nowadays) duty bound to furnish the patient with a comprehensive list of complications, possible outcomes (including grim ones) and, yes, we need to offer as accurate a prognosis as we can when required. But there are ways to implement and convey all this to the patient that are helpful and ways that are destructive. Blessings and curses.

I have learned the hard way,  and all I can to is apologise to anyone I have ever disappointed or dismayed by my words in the past. But I think every doctor should learn what it is like to be cursed by the words uttered by someone into whose care you have placed yourself when at your most vulnerable.

Nor is this blog aimed at true ‘end of life care’. In another context, at another time, I have also experienced the amazing skill and caring available through hospice and home care services. No, this is aimed at the boggy ground at the start, as we stand at the threshold  of the long (or sometimes frighteningly  short) path sign-posted ‘oncology patients this way.’

So doctors and therapists, please read these examples and do not dwell on how they measure up to how you are supposed answer these questions. These are truly challenging issues, so there can be no protocols, no rules, there is no properly researched-based guideline.  I ask you to stop being ‘the doctor’ whilst you read this, but also to understand that you cannot put yourself in the patient’s shoes. Unless you ARE that vulnerable, sick, anxious patient , you cannot know what you might want to hear. You will think that you know what you personally would like to hear and how you would want it said; take it from someone who has been there: you don’t, you can’t, you won’t …unless  you get there.

You will no doubt have had professional experience of all the below exchanges and many more on the theme. You have seen it all. I may be seem to be ‘teaching grandmothers to suck eggs’. I know you will think the ‘wrong’ answers may well have appeared to have sufficed perfectly well for many. All I can say is you have not walked back out through the hospital corridors with these people, you have not sat in the car on the journey  home with them, lived with them and their families through the ensuing hours days and weeks, talked with their relatives over a paper cup of hospital coffee, watched them tell their children, and watched them toss and turn all night long. I  am sorry but  your ‘extensive experience’ is just not enough.

Of course, my ‘better’ answers may be little or no better in some cases, who can say. All I can tell you about is what I, and at least some others like me, have felt when faced in real-time, in  real life with these questions and answers. It is anecdotal, and doctors hate that. But they are feelings, described in the moment,  shared with others who have been there, and who are there, with whom you do not have to be polite, or restrained, or stong. It is not statistical, it is not a double-blind trial, it’s not even a proper survey.

But it is raw and it is real.

 

1. On delivering “bad news”

WRONG:  “tests show you have…(something pretty nasty)…
you will have to undergo… (nasty treatment)…
the outlook for your future is… (Depressing)…”

WRONG: “you have cancer I am afraid.

BETTER: “The tests have been very helpful, we can now get on and plan/begin treatment to combat/cure/defeat this disease.

[It is then possible to proceed to give the condition a name and severity, but always countering any ‘nasty’ news with an optimistic plan in which “we” cooperate to solve the problem. Yes, I know you are not allowed to promise to cure the ‘incurable’ but, especially in the most dismal cases, you need to read those survival stories that are out there, no matter how few, no matter how unlikely, no matter how unscientific, and take what tiny ray of hope there might be that maybe there are true exceptions and YOU must believe fervently that every patient sitting in front of you could be THE ONE. Travel the journey of hope with them. You must be able  to honestly tell then with compete conviction that you are hopeful. It is the very least you can do, and in some cases the only thing you can do. But do NOT allow yourself to despair at that point. A patient can spot a doctor with no hope in his or heart a mile off. We, as patients, then have only two choices: to abandon hope or abandon trust in the doctor. Neither are good for prognosis.]

2. In answer to a direct question about prognosis from the patient, who has realised or just been told they have a ‘terminal’ diagnosis.

WRONG:you have something in the region of… x …months to live”, (or any other variation on any personal estimation/prediction of lifespan.)…..

[ I am not saying don’t give figures but it is very important how you give them, and this is the WRONG way! ]

BETTER: “yes, the published statistics for cases such as yours may not look good when you read the raw data, * but you are not a statistic, you are an individual and in your case (…in here insert any individual favourable factors that may in any way be encouraging, no matter how small…) so we cannot apply the raw data to you. With this condition, there are many patients who go on to lead fulfilling and happy lives (in the case of reasonable statistics to support this) or (in the face of the most statistically severe prognosis) exceptional patients who beat the odds . There is no reason at all why you cannot be one of those, we are going to work together to make it so.”

[* when discussing statistics and prognosis, it should be immediately and firmly explained that these are ‘other people’s statistics’ …including the old, the defeatist, the unfit and the disinterested… as well as those of those who went through this without the current skill and experience at our disposable here, at this time, in this place, with this team of experts. Separate the patient from the statistics.]

In my opinion it is reasonable to furnish the patient with inspiring testimonies of patients who have survived and thrived, you may have some in your practice (but beware how you deploy them… See point 3). If not, anyone can find plenty of these on the internet and through support groups, [some links to star you off here and  here and here] and if doctors are not familiar with these they damned well should be! Shame on you! Be as sceptical as you like, but how dare you ignore these patients just because they do not fit the norm, and for daring not to fit onto that statical survival line. Which leads to the subsidiary question:

3. Surely there are exceptions to the rule?

WRONG: “no, not really.”

WRONG: “well they are only anecdotal stories”

WRONG: “not that i can give you.”

WRONG, WRONG, WRONG: “well we, in this centre,  have seen one or two patients who have survived x number years
[Is that supposed to cheer us up?!?!  It may sound helpful from your point of view  but said in this way it conveys a terribly depressing and hopeless tone. It says ” I have seen the odd patient who stretches the odds a little but no more than a little and don’t pin your hopes on it’ .]

WRONG WRONG WRONG WRONG, and the very WORST KIND OF WRONG: “I wouldn’t want to give you false hope.”#

SO WRONG IT BEGGARS BELIEF: (the answer I got) “Definitely not. Nobody survives this disease.”

[# THERE IS NO SUCH THING AS FALSE HOPE! You can have hope or no hope. If the doctor believes there is no hope, the worst that can happen is that they are proved wrong and are surprised by a recovery against the odds. If the patient believes there is no hope, they will not only die, but die without hope. The doctor’s role should be  to instil hope in every possible factor that might or might not add to success, and NEVER to question, let alone dispel, hope of any kind. (see below for how to handle questions about addition measures in which the patient may place hope)] see my page on hope.

BETTER:Certainly, there are many exceptions, and they are often inexplicable in medical terms, which just goes to show that there is far more than medical treatment involved in individual healing. You are the major player in your own healing: the building up of your own body’s resistance, your will and spirit, your determination, your vision for the future, and the wider support that surrounds you are most powerful factors, without which medical treatment is impotent.”

4. To a question along the lines “what can I do to maximise my chances of cure/success doctor?”

WRONG: “nothing.”

WRONG: ” just take the treatment I give you.”

[by all means stress that the treatment offered is the best there is (if that is true) but if that treatment is offering the patient anything less than a very good chance of cure, never peddle this as the only option. Take it from one who knows, an offer of a 1-2 year lifespan, much of which might be spent on chemo or radio and in hospitals is not something in which  to rejoice, especially when until five minutes ago you were happily counting your lifespan in decades  not months .]

SO, SO, WRONG: “don’t try to do or take, anything in the hope of making things better incase you just make things worse.” (Can you believe this is said to many patients, particularly by oncologists?)

[I understand that oncologists must stick to their protocols and must be very wary of interactions with the highly toxic therapies they prescribe. There are some  theoretical (disputable?) difficulties with certain foods and supplements BUT what is unacceptable is when this same blanket advice has been dished out without discussion, with  refusal to listen properly to the patients’ or relatives’ suggestions, (let alone taking the time to read any ‘evidence’ they bring), and certainly no explanation of the  doctor’s fears. You may think it is ‘safer’ to have a blanket policy. It is not: nine times out of ten the patient will take their pathway of hope anyway… they cannot afford not to, they just wont tell you, and you will have lost their trust.]

BETTER:YES, there is a lot you can do” then select from a list, either led by the patient or from some or all of the following:

  • Look at your diet and lifestyle and make it as healthy as possible in order to place your natural defences into the best possible state to fight the disease. Understand that every person alive has cancer/diseased cells within the body at all times, and our bodies are designed to destroy them; it’s just that sometimes our defences are down. Medical and surgical treatments are necessary  reinforcements, that come to the rescue when the body is temporally under siege. But they stand a much better chance if, at the same time, your body’s defences can be restored.
    [This advice will need additional support, enquiry, and information about diet, nutrition, stress, smoking, alcohol and social or domestic problems… do NOT neglect this aspect of treatment.]
  • Take heart, the most powerful tool in the defence against disease is YOU; believe in yourself, you have the power to tame this disease and banish it from your life.
  • Live well and take joy in your life, people who have purpose and intent for their lives live longer and better lives; so plan for the future, not in the ‘bucket list’ sense but in the sense that from now on your life will be a good and purposeful one.
  • Don’t be afraid to expand and increase your dependence and contact with your friends, social circles and family. They are the ones who care, worry about you and can support and encourage you. When you lean on them freely whenever possible, you not only free up your hard pressed resources to concentrate on the healing process, but you bless them by showing you love and value them when they are feeling powerless to help you. Evidence shows that people who have a wider, closer range of social contacts live longer.
  • Spend time with happy, positive people and laugh a lot. People who do this have not only happier lives but live longer. [ref and ref and ref]
  • Explore/re-evaluate spiritual matters. There’s more to life than we can ever know or understand and doctors, therapists and scientists do not have all the answers. If they did, the outcomes would be predictable and regular. They are not. Doctors, researchers and scientists do not hold the keys to life and death. [ref] [my page]

[It is not unprofessional to discuss interestedly, sensibly, and in an informed manner, so-called ‘unproven’ treatments and anecdotal success stories, [some links] in order to give hope, no matter how slim, where there was previously none. It IS unprofessional to destroy hope no matter how apparently (in your opinion) misplaced, unless you can produce well evidenced proof, not just  that the object of that hope is  dubious but that it is actually proven to be utterly contra-indicated or harmfull in this case. In this day and age, patients will have already have diligently searched the internet and beyond for evidence; they will not want to put their trust in anything that, to them,  has no basis of fact. The doctor had better damn well be prepared to go and read that same evidence and think long and hard, amassing convincing conflicting evidence if appropriate , before they dismiss it out of hand. This may mean reading articles and papers from alternative sources with (shock horror) an open mind.]

5. When admitting defeat (in terms of medical treatments) .

WRONG: “I am sorry there is nothing more we can do for you.”

WRONG: “I am sorry the treatment has failed/ not been successful.”

BETTER: Your body is an amazing machine which has been beset by disease when its defences were down. We have administered  all the medical treatment we can, to support you. You need now to allow your body to recover from the onslaught, and take over the fight once more;  so let us now support it to fight back, the best way we can.” (Better given as a message before treatment and then reinforced at this point. And, in answer to follow on questions about what that comprises, refer to list of the things you can and should be doing listed in answer to question 4.)

6. The ‘consent form

These are fairly standard forms. The ones I have had to sign for chemo have been closely typed in small print, the sort of things you would never read, especially in highly charged situtations. There are always a few ‘fill in the blank’ lines where the doctor inserts the precise treatment and the purpose and for the signatures. It is these with which I take issue, because though the form may not be great, it is the Dr who is the one responsible for communicating those vital words, which will probably be the only ones we read, which will stand out like a sore thumb and that will continue to haunt us…..

“purpose of treatment ……

 

WRONG:  “to delay recurrence of the cancer.”

BETTER: “to aim/attempt to prevent recurrence the cancer.”

The first says ” this nasty treatment, with all its side effects that you are  signing up to here, is not going to solve anything in the long run anyhow.” The second says “ok, this may not be a breeze,  but we have a very good reason for doing it.”

Some patients can look forward to successful treatment, within the statistics. Others, within the statistics, will be less fortunate. Whichever path we have to tread, it will be easier, happier and more bearable with hope. Learn how to dispense it liberally and in all its various forms. 

Further reading:

https://stgrenal.org.au/sites/default/files/upload/Oncology-and-hope.pdf

http://www.huffingtonpost.com/joseph-nowinski-phd/hope-survival_b_819005.html

http://www.amazon.co.uk/The-Anatomy-Hope-Prevail-Illness/dp/0375757759

http://jco.ascopubs.org/content/26/36/6001.full?ijkey=2e8783d37d4b6cc873541c115f2a41f59af0d53f&keytype2=tf_ipsecsha

[for my rant on the blog posts on this subject click here and for a blog-rant about consent forms go here]

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