When Husband was diagnosed with prostate cancer several years ago, the specialist was very honest and used words and phrases like the following:
- advanced, aggressive, incurable, terminal, palliative
- too late for chemotherapy, radiotherapy or prostatectomy
- 1 – 3 years left with hormone treatment
Now, by my calculations, Husband has now out-lived those 1-3 years by nearly another 1-3 years, so the incredible heartbreak and stress we experienced when the situation was put to us so honestly that day was, I now think, unnecessary. In other words, knowing the truth of the diagnosis wasn’t particularly helpful.
On the other hand, with the Parkinson’s disease diagnosis (before the prostate cancer one), we were told very little about what to expect. Partly this is because is it a bit of a mysterious disease that affects its ‘victims’ in very individual ways. For example, Husband doesn’t have that shaky thing most people associate with Parkinson’s; instead he has immobility problems in every way. Nevertheless, it would have been great to have been given a bit more honest information about what was coming, or at least what might be coming.
Several posts ago, in discussing Son’s scoliosis operation, I mentioned how terrible it was for Son to be told post-surgery, by one of the specialists (not the surgeon) that he would be incapacitated for a year while his spine healed. That honesty was, I believe, bad timing in the sense that he was still in hospital recovering. During our latest appointment, however, the same thing was said but this time it was more palatable.
The honesty conundrum has also been tricky this Easter weekend because Husband is wondering why Son is staying at Grandma’s so, tonight, as I was tucking Husband in, I admitted to him that Son finds him difficult and that I find it difficult having both of them in the same vicinity! We had a laugh, so the honesty of telling Husband something so hurtful was alleviated somewhat by humour.
Tomorrow is Easter Sunday so Grandma (my mother) is bringing Son home and we are all having lunch together (roast turkey, but I never told Bubble!)
Son rang me last night from Grandma’s and asked if he could speak honestly and I said yes and the conversation was very long and cathartic. Son admitted how difficult he found Husband, but he also admitted how sorry he was for this and that he would try harder to be more patient. I told Husband about this conversation today and we shed a few tears but not too many.
And, on the topic of honesty, why didn’t the people who sold us the peacocks tell us they sleep in the trees? If they had told us, I wouldn’t have worried so much about that fox getting them!
Happy Easter … honestly!
jmgoyder 
Great post and thoughts. You have such a caring soul.
(I’m being slowly lazy over my morning coffee and the birds are lining up along the deck rail waiting for their food…. entertaining!)
Wish I could join you!
Me too! I’d not feed the birds so I could show you the adorable characters as they lined up to bed. Plus I’d love your company.
Get a picture of those lining-up birds, then put the kettle on!
We work very hard to be honest and have taught the children that it is critical in this family. However, timing is also important. Now Drs that is a different thing. They are giving you information, I can’t say there is honesty involved, since they don’t know what they do not know, it is more should they or shouldn’t they tell you what they have found. Like you said, Husband has this part of the Parkinson’s but not that. Personally, I like having all the information and then making informed decisions based on what others say and what I see reality to really be for me and mine. But I agree, sometimes, I wish I did not know somethings because it would just make it easier. Glad your son was able to be honest and tell you his feelings. On the other side of really hard things is a freedom that you can only know when you are there. Best wishes to you and yours on your holiday season.
What a fantastic comment – thank you soooo much!
I wish all the doctors I met with told me that they can’t fix me, but they could make me more comfortable. But doctors here are so worried they will get their patients addicted, prevented me from feeling so much. This last doctor, after 8 years of hearing nothing, he said, “has anyone sat you down & told you you’re not going to get better, but I can take some of the pain away. His honesty finally made me accept what the rest of my life will be like. and I am grateful for his courage to speak the truth, instead of looking at me as a paycheck.
Thank you for revealing your situation in this comment – it seems to me that you and that doctor both have huge (honest) courage. I do wish you well!
What a lovely post. Thank you.
Thanks for reading it!
With my mother’s illness, the hardest thing has been accepting it. Wondering if she’s ever going to reach her full potential. Wondering why she had to have it. Why couldn’t she have a better life. Why does she have to struggle so much through life. It’s not an honesty that came from doctors or family or even herself. It’s an honesty I’ve had to get to on my own and it is raw and pure and deep. Some days I prefer the less raw and pure and deep honesty – a buffer to soften the blow. I think that’s what some people try to give us – the buffer in life.
You have such a wonderful way of expressing your honesty. Thank you for sharing it.
Thanks for your comment and that buffer idea is such a good one!
I do believe honesty is the best policy, mostly, but with a little tact thrown in.
Can’t see your photo.
Sorry about the photo – it was dark so it didn’t turn out!
Great post.
I think honesty would be my preference (when being diagnosed with a serious and/or teminal illness), but there are ways of wording that ‘honesty’ that incorporate compassion and sensitivity towards both the patient and his/her family. The tone of voice, the speed of delivery and the eye contact also give some reassurance to the patient of the Doctor’s care and intention. I think if a Doctor takes the time to understand their patient’s true needs and develop the doctor/patient relationship in a sincere and heartfelt way, this goes a long way towards easing the mental and emotional trauma that his/her words will inflict (in their honesty).
One of the books which sits on my bookshelf (awaiting a re-read) is called Medicine & Compassion – A Tibetan Lama’s Guidance for Caregivers by Chokyi Nyima Rinpocke with David R Shlim, M.D.
In the foreward, a doctor and psychiatrist ask how many physicians have any sense of how to become more compassionate. Doctors know what it takes to become technically competent. But can they develop compassion in the same sense that they acquire other knowledge and skills that make up the craft of medicine?
The book replies to this question in the affirmative and is well worth reading.
But ultimately, a prognosis affects each person in a slightly different way and the doctor’s understanding of the patient’s individuality and unique needs should always be foremost in the delivery of the truth.
I find it really inspiring and uplifting to read of your family situation and the love that is revealed in the sharing and caring of each other’s feelings and physical needs. Your Son shows great maturity in his ability to express his feelings and understanding of a difficult situation.
You and your Husband must be very proud of his strength, resilience and humour.
What a wonderful comment – thank you Victoria! I am going to find that book!
Life. I hate the hard parts. ~ Lynda
Thinking… do foxes climb trees, are the branches really low, or do they lay in wait for one of the peacocks to have a wild dream and fall off the branches in the night? (seriously, well mostly)
I don’t think foxes can climb – I hope not! You are funny!
Very thought provoking post. I reckon honesty is usually the best policy but the question is to what degree. The whole truth, or a little bit of truth?
E.g.
My father in law is in the latter stages of prostate cancer and he was told by a particularly insensitive medic that he wouldn’t leave the hospital alive. I don’t think that needed to be said, at least not in that way. And he did make it out under his own steam. But it wasn’t so much the effect on the old man that was the rpoblem, it was the effect it had on my mother in law. When the truth can frighten someone I thnk it must be phrased intelligently to minimise unnecessary distress.
Best wishes for a very relaxing Easter.
I think you are so right about the degree of honesty and your experience highlights that so well – thank you! I wish you a happy Easter too.
I think honesty is always tricky. What one person sees as reality doesn’t always suit someone else’s view of the situation. Your son is awfully young to deal with some of the serious things that have been thrown at him. And your husband’s holding up well for what he’s going through. And you’re coping better than most. I think you’re all doing remarkably well, considering. So have a great Easter!
You are so right about honesty being so tricky – thanks for your generous comment and Happy Easter to you too!
I am fine with doctors being honest with the facts. What I don’t like is when they venture into guessing, and pass that off as facts. Great post, as always!
Thanks – I guess it’s a tricky dilemma for the docs too.
Love how you ended this one Julie, on a humorous note. Seriously wishing you a peaceful Easter. Margie
You too Margie!
I wish the drs could take a course in bedside manner. I could have used a gentle explanation when I was diagnosed with MS, but no one said anything. I finally had to ask, “So, is it MS?” She said yes and went into a dialog about treatment plans. I had already done the research and had been having MS-like symptoms for years, but I was still shocked to have heard it. I didn’t know how upset I was until I got lost on my way back from the drs. I finally pulled over, had a good cry, got myself oriented and made it home.
I guess no matter how you get “the news” as long as someone tells me honestly, I guess I can accept it and then learn to cope.
I can just picture you in the car, crying. Your courage is inspiring!
Happy Easter, Julie – wishing you and your family a very happy day together – and if Bubbles asks what’s for lunch, I would say, it’s best not to be honest on that front 🙂
Happy Easter to you too bluebee! Yes, I’ve decided that Bubbles doesn’t need to know about lunch!
Doctors have very different opinions on how much imformation they should impart. They told us we had a 40% chance. Whatthey did not tell us at the time was there was 40% chance of surviving 5 years. We decided that if some one told us we had a 40% chance of winning lotto we would be excited as the odds would be good.
I looked up the meaning of Oncologistonce. It is the study of Cancer. I have the upmost respect for doctors, they are such dedicated hard working people, but some times they are making educated guesses.
Is it it better to give people hope or make you face reality? Or in your case they got it wrong and put you through unnecessary emotions ahead of time. Unfortunatly there are no right answers as each case is different and put different personalities in the mix just makes it so much more complicated!!
Your words made me cry because I have never forgotten that day we bumped into each other in the hospital – you with your husband and me with mine – having all been given bad news. I often think about that day and about how things have turned out since then. For you to have lost your husband, so young, and for me to have my husband so frail and sick but still alive. I don’t get it and even Husband has said how unfair this is because he is old. I think what you say in your comment is so wise and of course you are right – there are no right answers and it must be very tricky for the doctors. Wishing you and the girls a very happy Easter, Helen. Juliexxx
My mother was told she would die so she did.. i have not been to a doctor for almost twenty years (after a nasty incident with a doctor and his prognosis) because I truly believe that if I do not hear it i am NOT SICK.. now of course i am that emu or whatever with my had i the sand, but it is comfy in here! LOVED this post, doctors are not gods ARGUE with them! c
You are a wise woman!!!
Just reading this now… such a great post, and important issue you raise. I have done a lot of reading on this topic…Jerome Groopman’s , Anatomy of Hope comes to mind. Even though I’m typically one who needs to know the truth no matter what…I have learned that there is power and energy in words, especially those which come from an authoritiy figure such as a physician. I still feel that I’d want to know the facts when finding out I hava a given condition, but the “healer” should consider his tone and should offer compassion and hope in revelaing such information. It can make a world of difference and should be part of all medical training imho!
Very interesting comment – and you are so right in every way!
Great post! Personally, I prefer doctors be frank and honest with me, but with compassion.
I was reading an article a couple of months ago. It was about adults lying to other adults, and something like 80% admitted that they lie a lot. I understand lying to children (Tooth Fairy, Santa Claus, etc.) but lying to other adults so much caught me off guard.
On a tangent, I was recently given a home inspection referral because the referrer said he liked my bedside manner when discussing problems with real estate.
Maybe you should have been a doctor!
I always wanted to be an anesthesiologist until I found out how much schooling it required and how much in debt I would be before I ever got a job!
Ha!
Honesty is always the best policy but many doctors don’t have very good bedside manners. Also, medecine is not an exact science is many cases so there’s a lot of unknown. I think doctors need to be honest but also encourage patients and their family to have hope. I had to have fibroid surgery a few years ago and the surgeon told me something very simple, but I still remember it today. “My job is to worry about the worst. Your job is to hope for the best.”
What a wonderful quote!
There is a “rescue” Zoo near where I live – the inhabitants of this Zoo are animals and birds that were rescued from other Zoos or homes.
I visited this Zoo once – and was astounded by all the Peacocks that were wandering around the place. They are so NOISY. They were on top of the cages, in the trees, etc., etc.
I understand how you felt about seeing your Peacocks in the trees!
Honesty? Sometimes honesty can be cruel. Doctors don’t know everything.
What a great and interesting comment – thank you!
Great post! As others have said — honesty with compassion is what most of us want and need. But even if the same thing was told to each of us in the same way, we would come away having “heard” totally different things.
Julie — You and your family are such an inspiration — honesty is part of that but also that you all are willing to accept each others weaknesses! Real love isn’t overlooking faults or failings, but seeing them with compassion. And the humor lets you move forward. Life is guaranteed to hold ugliness and heartbreaks, but we can’t move forward if we are paralyzed by our fears.
I haven’t had much time to comment lately, but I’m always so thankful that I have your blogs to read each day!
Thanks Linda – I really appreciate this comment so much! Juliexxxx
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