Dying Secrets

I knew immediately it was a problem.  It was not just that Faith’s cancer had spread with innumerable masses in her liver, golf-ball-like tumors in her lungs, punched out holes in her bones.  It was not that the chemo, third round and toxic, had failed.  Those were awful things.  Rather it was her response as I began to tell her.  As soon as I said, “I looked at the CT scan and I do not have good news,” she silenced me with an upheld palm.  Faith then told her husband to leave the room.

“What does the scan show?”

 “The cancer is increasing and spreading. The treatments are not working.”


 “There is more disease in your lungs and for the first time there is cancer in your liver.”

“What does that mean?”

 “It means that it is going to be very hard to bring this cancer under control.  I am not sure any treatment will help.”

 “Am I going to die?”


 “How soon?”

 “I am not sure, probably in the next couple months.  Maybe, sooner. We can try to treat you, but it may not make much of a difference.”

 “OK.  I understand.  I have known that ever since the cancer came back.  But, for now, I don’t want you to tell my husband, I don’t think he can handle it.”

Like I said, a problem; but in no way unique. This kind of conversation in myriad forms is common in the practice of oncology.  “Do not tell my husband that his cancer is fatal.”  “Do not tell my wife that my cancer is fatal.” “Don’t tell my parents I’m dying.”  “We will tell the grandchildren at the funeral.”  “We will talk about it when things get really bad.” “Hospice is OK, but don’t tell her she has cancer.”

It is human to maintain control and protect each other. We try not to bring pain to those we love and we avoid emotional discussion and confrontation.  It is hard enough to deal with bad news without adding the social confusion of family and friends. Even compassionate doctors may aggravate the problem by accepting obstructions instead of constructing open dialog. Still, artificial distance is bad.

Two major issues arise with poor end-of-life communication. The first is decision chaos.  When family members do not have a similar understanding of what is going on, are not on the same page as it were, then decisions are difficult and unstable.  Perhaps a patient wishes a focus on comfort, but the family is still pushing for cure.  That can end up with a terminal patient in an intensive care unit connected to machines they did not desire.

Alternatively, treatments are going well, but friends and family are drifting away, giving up or perhaps frantic for second opinions.  While the patient wants to feel good about what is happening, all around them are depressed friends hanging crepe.  It is hard to stay motivated when everyone is shoveling earth on your grave.

This is the second problem, a loss of natural support.  Husbands and wives who have lived decades together, built careers, raised families, shared in life’s defeats and victories, are suddenly separated by a verboten conversation.  A frightening black cloud hangs over, as they cannot talk about the thing that matters most, their deep love and the end of their time together. You cannot say goodbye when you do not know someone is leaving or cannot discuss the journey.

For caregivers, physicians, there are several lessons.  First, it is vital to help patients open channels of communication.  There is great personal, social and cultural variation among families, but the more honest the interaction the better everyone will do.  It takes less time to facilitate sharing, than to repair the damage that results from unshared ignorance.

In order to get permission to talk openly to other family members, a doctor or caregiver must show that that they can give bad news in a gentle and supportive way.  The person asking you to keep the bad news secret is worried you are going to cause pain and panic.   The key is how you interact with that first person.  If you are gentle with them, listen well, give support, and explain clearly, they will believe that you will be the same with the one they love.  Then, likely, they will allow a more open discussion.  When such communication is done in the presence of the patient, things tend to go even better.

Giving terrible news to those we love, announcing suffering and loss, can be the hardest thing we do in our lives.  Still, it is vital that we have the opportunity and it is every caregiver’s role to help.  Life is hard, but we can cope if we share it together.



  • Paula Kaplan-Reiss
    Thanks, Dr. Salwitz. I teach a human development course to students in a Doctor of Ministry class at Hebrew Human College. This is going straight to my required reading list for end of life issues.
  • Jim, Just to let you know that I am still around, to the surprise (and delight) of my medical team! I always ensured that my wife accompanied me to key meetings with doctors, so she would get it directly (and provide a second pair of ears), and then we would share major news with our kids, again to ensure no surprises and help them prepare. Not always easy, but in the end, better for all. Andrew
  • meyati
    My X husband is in a hospice on the other side of the country. It's been 4 months since the mesothelioma was discovered. Maybe, you can't understand this, but it's gone so quickly that in some ways it's a mercy. I'm grieving, he was my only love, but if I went, it would just cause turmoil and fussing with his brothers and the rest of the family. . My son has to keep appointments at the VA today. He should be on his way to be with his father tonight. I told my son not to wait-talk to his doctors,-go back again. I just hate that young blonde that he drove off with. His brothers probably don't know about that, and what that implied for our home life. He still deserves some dignity at this time.That's the only way that I can show my love.
  • From my personal experience with my mother's terminal cancer and my father's terminal kidney disease, the less family members involved the better. Oh in the ideal world where everyone loves one another and all agree on medical decisions, the more the merrier. In my experience, the person who is dying has already lost enough control and dignity without the added burden of most family members and their dueling opinions. What does the dying person want - let's start the discussion there.
    • D Someya Reed
      Bravo, Pam! I just read this response of yours and your last line is superb. What the dying person wants should be paramount to every medical professional and every hospice & palliative care worker no matter what position they hold. Hospices say they want this too but it is more lip service than fact. We would like to hope it to be as altruistic as they claim but altruism is not a natural condition for the majority of people. If it were, we wouldn't constantly be required to answer the largely unspoken question that we are so often called upon to do, "What's in it for me?" Some would say this is a cynical view but I say it's a realistic one. It is far better than the one supported in the post ‘Coping with a child’s eye’ where it is proposed as better for a child to “learn to feel that the world is stable and loving, even when it is not.” How do you suppose that child will fare against the majority who are willing to use that (unrealistic) perception to their own advantage? Posts in denial of the real world do no one any benefit if their only purpose is to make us feel good. The best we can hope for in the "real world" is to have the explanation of our needs and desires listened to (first) then be given an "honest" accounting of what can be done to support them. Far too often, what we get is merely a rehash of marketing drivel.
  • I'm trying to get more involved in doctor/patient communications, and communicating to families is surely a challenge (I'd like to say rat's nest.) I wish there were copies of this article for my research mat'l. You always give us specific suggestions with good reading. .
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  • Dr. Salwitz, thank you for your thoughtful and relevant articles. As a hospice counselor both in spiritual care and bereavement over 20 years, I will attest that these communication challenges you write about often continue well into a patient's hospice experience. When your patient Faith, stated, "I don't want you to tell my husband, I don't think he could handle it,” was she really saying, “It is me that’s not ready to deal with my husband’s broken heart and heightened grief right now. I’ve got enough on my own plate to try and figure out for the moment.”? Hospice families have taught me how everybody moves at a different rate of speed toward a frightening reality. Some move imperceptibly slow while others march right up to it saying, “give it to me straight.” And while professionals like you and I are at-the-ready to artfully facilitate conversation, painful news usually has to soak in a while. Faith was the one who had go home and navigate the end of her own life as well as deal her husband’s reaction to this painful new reality. Your article nicely articulates the value of openness and the potential complications that follow a lack of family communication. The manner and style in which families communicate is so very different. Some are sophisticated and thoughtful while others are clumsy and self absorbed with poor communication skills. As a helping professional who is regularly invited into these homes. Following are a few noteworthy things I’ve learned over the years, that are consistently helpful for me: 1. Some family cultures consider it bad manners to speak openly of dying and death before it’s imminent, complications notwithstanding. Accordingly, they are quite willing to deal with any challenges that pile up during and after the death. They know full well what’s at stake, they just choose not to speak openly about it. 2. Other families who are uncomfortable with using the “D”-word, will use code language or references to elude to dying and death related matters. They deal with necessary clinical issues but still find a way to communicate indirectly about emotional matters. 3. Contrary to conventional wisdom and much of the literature, not all people who are dying (or their families) feel the need to say formal “goodbyes”, discuss their journey, or convey their love and thanks to family and friends, nor do they feel the need to heal unreconciled relationships. As helpers, if we are overly attached to a value system that suggest this is what represents a “good death”, we risk estranging those who don’t share our value. I too, encourage patients and families to communicate openly and honestly. I assure them, with support, they can tolerate hearing the truth. I also find it encourages families when I share a couple of stories about others patients and families who chose to discuss openly these issues and had positive outcomes. They like hearing stories about others going through what they too are facing. But, ultimately our patients and families need to feel they are always acceptable and welcomed in the relationship we’ve built and they will not judged by us on how they communicate or for the choices they make under our care.
  • Kris
    We deal better with what we know, especially with what matters to us. How to deal with them? That's another question.
  • D Someya Reed
    Communication is very important in many cases, agreed, but why must a doctor press a patient to do something when the doctor cannot possibly know the family dynamics better than the patient? Aren't you pushing the bounds of patient privacy rights here? The best I think you can hope for is a "maybe you're underestimating him in this particular set of circumstances." To pressure a patient, dying or not, to disclose what they don't want to disclose just to open lines of communication is nearly malpractice in my opinion. I'm sure that your own conversations may progress like... Have you told your husband? No, he doesn't handle this stuff very well. Under the circumstances, do you suppose you might be underestimating him a little? Maybe. Why then don't you think it would be a good idea for you two to discuss things and maybe he can be more helpful for you? and so on... But this piece reads a bit more urgent, more aggressive like if you don't tell him, I will...he has to know and it's my job to make sure he does. What if the last time she cut her finger, to take things to an extreme, he had to go back into psychological rehab due to the effects of some previous traumatic event. You can't know. What if telling one's family makes them always weepy around you or sets them off planning your funeral and asking for your opinion and for your stuff? The patient is always going to know more about this than the doctor and in all cases. It's not always about control. It's not always about protecting other members of the patient's family or friends. Sometimes it might be for the best protection of the patient from some overzealous or over-dependent family members and this they may never tell you. Not everyone wants to say goodbye. Just as hospice uses the tagline...live well until you die...some patients might want that very same thing and can't have it if the family they know, but you don't, finds out. Just a caution.

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