Gilbert Cranberg: Norma
Posted at 11:28 am, October 24th, 2010
In my work secrecy was a no-no and the right to know sacred watchwords. So when my wife had emergency surgery and the pathology report revealed untreatable cancer, why did I want the truth kept from her? Because she was not an abstraction but a complicated person with anxieties who would be far better off not fretting that every twinge was a sign of advancing cancer.
Two of our sons are MDs who were instructed in medical school to level with patients. They swallowed their misgivings about my decision but respected it and did their best to run interference with other doctors whose help we needed. Only one physician, an oncologist, refused to examine Norma under the non-disclosure condition we set.
Hospice was another hurdle. I visited the hospice nearest our home in Des Moines and noticed immediately the many staff wearing badges announcing their connection to hospice. I explained to the supervisor that Norma would understand from this that she was terminal and could a way be found to keep her condition from her. My request was taken under advisement. I was told later that upon review hospice’s policy of leveling with patients would not be modified.
We learned that hospice is not monolithic. A half-dozen hospice organizations operate in Des Moines, with varied policies. Our daughter found one that provided the full array of hospice services but without anyone identifying themselves to Norma as associated with hospice. We signed up with that hospice, which was affiliated with a Catholic hospital, and had no regrets.
The very fine nursing home where Norma spent her final weeks announced one day that Norma would be the subject of a special meeting. We arrived to find a room full of staff. The administrator said the meeting was convened because several therapists wanted Norma to be informed about her condition. They were uncomfortable, we were told, when Norma complained to them she was not showing improvement and they could not tell her why. I refrained from asking if any of them wanted to tell her, “Norma, you are not improving because you are dying.”
The clincher proved to be Norma’s psychiatrist. She had gone to him for years for anti-anxiety prescriptions and had become close to him. He showed up at the nursing home one day unannounced on a purely social visit. As he was leaving he stopped to chat with my family gathered outside Norma’s room. He volunteered that he wanted to say how much he agreed with our decision not to tell Norma about her condition. When I revealed this to the meeting of nursing home staff, the meeting broke up without another word.
My family has thought long and hard about how we dealt with Norma. The secrecy made things more difficult for us. But never have we had a moment’s regret. A lot has been written about death and dying and many fine sentiments have been expressed about truth-telling. Not enough can be said about how families know the patients best and about how the judgments of loved ones need to be solicited and trusted.
October 25th, 2010 at 10:34 am |
My mother died of colon cancer in 1948. She was 48 years old. As was the custom in those days, patients were not told they had cancer, neither were the children. After the first surgery, she rallied, gained weight, and enjoyed some months of feeling good. I don’t believe she would have had this period of hopefulness and enjoyment of life had she known she had cancer and would not live to see her children grow up.
As she reached later stages of the disease, she couldn’t understand why she was getting sicker. She had a friend secretly take her to a different doctor. She came home very subdued. I believe he told her. At that point, I think she needed to know.
As a nurse who has lived a long and full life, I would want to know. I’d want to make decisions about my care, say my good-byes, and make sure my affairs were in order.
October 27th, 2010 at 12:04 am |
Mr. Cranberg,
My mother checked out in 1951 never knowing that she was slowly dying of Leukemia.
Nor for that matter did I or my brother know the truth of why she was in and out of the hospital treatment from 1948 on and still doing poorly.
Or why any issue which would be decided between my father and my mother was *always* decided in her favor–even when the issue was plainly irrational.
We were left to puzzle the behavior of my father who followed your view that she was “a complicated person [and (that) I and my brother were also] with anxieties who would be far better off not fretting that every twinge was a sign of advancing cancer.”
This resulted in years of emotional distress and conflicted relationships for me and my brother which had their source in the *inauthentic* family life dominated by a huge secret, never to be spoken of.
You believed this was in your spouse’s best interest.
No sir.
This was in *your* best interest.
*You* could not handle the truth, as Jack Nicholson so eloquently put it.
She would have grown–yes you do grow by developing the strength to share one’s tears with those who you love and cherish.
You on the other hand will have to continually tell yourself (and it would appear, the Blogosphere) that your failure to level with her was in her best interest.
Yah, sure, you betcha.
You are at peace with yourself.
But everyone else will see your grief and your moral failure to honor your wife with the candor she deserved after many years of marriage.
I wish you all the best.
It’s going to be difficult going forward especially when you have provided your children with a role model showing how to withhold the truth from you when *your* turn comes to be in the barrel.
May G-d help you.
October 28th, 2010 at 5:56 pm |
I had no choice in the matter because my husband’s doctor told him he was terminal before I could get to the hospital I resent that to this day.
I will not judge you, but I would want to know that I am dying. I think most people can handle the truth and have the right to know so they can make their peace and say their goodbyes. From my standpoint, I would never make the decision that you did.
November 6th, 2010 at 1:07 pm |
I ran across this column in Cityview and it has been haunting me ever since. I work with patients who are facing life limiting illness. I’ve seen all types of people who many different circumstances, the homeless, mental illness, people who are rich, poor and everything in between. Despite the differences in how they lived their lives and the circumstances they faced, each one of them went through a process and transition as they approached their last few days. A process that none of us truly understand. At end of life, people reconcile, come to terms with their fears, give apologies and say their goodbyes. As they go through this process, the dying reach a state of tranquilty and sense of peace. Those of us who work with patients at end of life hear the words over and over “if I had only known sooner that I was dying”.
I’m not hear to judge you or your family. I’m sorry for your family’s loss. I also wish you and your children peace and reconcilation with the decision you made. I can imagine it is even harder for your family now that you’ve chosen to share your decision with the world.
One of the greatest benefits of hospice is that it provides grief and bereavement support to the survivors for up to a year after the death of a loved one, free of charge. I’d recommend that you or members of your family take advantage of the support.
November 6th, 2010 at 1:54 pm |
My father tried to run the same interference to keep my mother uninformed of the status of her cancer. As a woman and her daughter, I saw in it, right or wrong, male arrogant presumption, trumping the inalienable right my mother had to truth and her autonomy, autonomy which withholding information would undermine.
My father’s wishes were vetoed, gently but affectively by me, by my mother, by my mother’s oncologist.
Not to be harsh, but I can’t think of anything more disrespectful than that the old school notion that such information is not good for someone and that we know what’s best for other independent adults. To me it is a moral violation of the first order.
November 6th, 2010 at 5:42 pm |
I apologize for the hacked grammar in my previous post. I shouldn’t have hit the send button. I do know effective from affective, etc.
I wanted to add something to the notion of being able to handle the truth, a phrase that appears in one of the comments above. I don’t understand what that means. What if someone ‘falls apart’ at hearing the truth? Why would one deprive them of the knowledge? Why is that process deemed worthy of avoiding? I just have such a deep faith in experience I don’t understand why some feel it is imperative to avoid important, key experiences and processes just because they are serious or upsetting or deeply profound. It seems necessary to me.
This might be a good place to raise an issue of the law. The only exception to the patient’s right to know is one accorded to psychiatrists or other doctors based on a patient’s mental state, if it could be danger to the patient or others. I know this law exists in some states, I am not sure if it is federal.
I have always been deeply offended by this law. I feel it is wrong and based on false, harmful and self serving beliefs. It is generally used to deprive mental patients with access to their medical records, ‘for their own good.’
I can see omitting a minor bit of information from someone socially whom I know to be upset by a topic, in other words, in matters of no consequence. I have yet to hear of a single example that has persuaded me that a right so fundamental as access to one’s medical records and information should at times be suspended for someone’s own good.
I am speaking from my shoes, and from a deep sense of what the universal standard should be. I can’t know what it is like to be in the author’s shoes.