1. Harpham, Wendy S. MD

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Newly diagnosed patients face a tough task: telling loved ones the news. Tough, because that supernova of charged phrases-"I have cancer"-spawns a tempest of fear and sadness that engulfs patients' family and friends, too. One increasingly common dilemma stymies some patients: Should they tell a parent with dementia?

WENDY S. HARPHAM, MD... - Click to enlarge in new windowWENDY S. HARPHAM, MD. WENDY S. HARPHAM, MD, is an internist, cancer survivor, and author. Her books include

I've recently come across a few insights that might help clinicians guide patients toward the best approach. They came to me after my sister, who lives in another state, called me recently with the shocking news of her cancer diagnosis.


Churning in the rushing waters of woe was worry for our 89-year-old mother, never far from my mind since taking her car keys three years ago and moving her to within three miles of me. Can Mom handle the news? Does Mom have a right to know? What if my sister and I disagree?


While parsing and prioritizing my concerns, dusty memories of a different-but-related dilemma arose. In 1990, right after my own diagnosis, I had asked my children's pediatrician, "What should I tell my kids?" He had advised me to suppress the maternal instinct to shield my little ones from the trauma and, instead, to actively include them in order to help them.


The operative word was "help." My sister and I needed to help Mom, and not just protect her. With that realization, the question that had served me well decades ago offered us a good starting point: What does Mom need to know?


For patients whose parent has advanced dementia that renders them out of touch, the answer is simple: Say nothing. But what about elderly parents who consistently fail mini-mental status exams yet still call a middle-aged child by name? And how does the cancer prognosis affect the calculus of disclosure?


Over the years of witnessing Mom's steady decline, I've occasionally visualized sand sliding through the neck of her hourglass. Rarely and only fleetingly-but understandably, given my medical history-I've worried about my sand emptying before hers. Now my sister's diagnosis introduced a third hourglass.


I would have had an easier time figuring out how much to say to Mom if I knew the amount of sand and flow rates in each. But I didn't. That uncertainty led me to refine my original question: What does Mom need to know now to deal with her world today?


My old rule of thumb for helping my children popped into my head: Tell Mom enough, not everything. We could tell Mom the minimum amount of information needed to explain any decreased frequency of my sister's phone calls and any sudden appearance of backup caregivers in my absence when I'm helping my sister. Should Mom ask questions, we could answer simply-and avoid volunteering additional information.


Of course, my plan of action depended on my sister choosing to tell my Mom. Since this was her illness, it was her decision.


But what about me? I'd labored to earn Mom's complete trust. I needed that trust for Mom to accept my assistance with each baby step toward her inevitable, total dependence.


In a way I'd never before fully appreciated, a patient's decision affects the well-being of the parent and the parent's caregivers. In my case, whether the new diagnosis was my sister's or mine, the number one priority with Mom was the same: We could not jeopardize her trust in me, her sole caregiver.


The temptation is strong for patients to hide the diagnosis, especially if a parent lives far away. But that secret forces caregivers to lie to the parent about the patient's health and illness-related changes the parent might notice.


A caregiver may end up telling the parent about the patient's cancer anyway, out of a sense of obligation or necessity. That disclosure can strain the caregiver's subsequent relationship with the patient, whether the caregiver confesses about having told the parent or lies about it.


For patients who decide to tell their parent, breaking the news may feel daunting. They fear seeing their parent's distress-and want to avoid feeling guilty about causing that distress. Or they don't know what words to use.


Clinicians may help patients by offering insights and tips, such as:


* No one answer fits all, but there is a best disclosure decision for your family.


* Keep it simple. Tell enough, not everything.


* Delegating disclosure is the responsible thing to do, if telling your parent is too much right now.


* Make sure someone-not necessarily you-provides the following for your parent:


* An understandable explanation of changes in his/her world due to your illness;


* Reassurance of the parent's uninterrupted care; and


* Reassurance that you are receiving good care.



Clinicians' stories can help, too. Patients may feel comforted by stories of patients whose parent understood the news yet responded relatively calmly, their dementia providing a welcome emotional buffer. Or whose parent expressed only momentary anguish, thanks to the forgetting disease. Out of sight, out of mind.


In addition, clinicians can introduce a philosophical question: "Does your parent have a right to know?" Again, stories may help, such as those of patients who were touched by their parent's response to the news-even if it was only to say "I love you" or to offer a prayer of healing.


Clinicians can refer patients to social workers or other counselors, clergy, and the parent's physicians for guidance and support, too. A referral may be urgent if patients feel stressed by ambivalence about whether to tell their parent or by a disclosure decision that puts them at odds with their well parent or a sibling.


Telling a loved one "I have cancer" is not for the faint of heart. Clinicians' insights and stories may help patients discern if disclosing their diagnosis would cause harm or would, in fact, honor their parent whose world is shrinking due to dementia. By helping patients make the best decision, clinicians help patients perform an act of love.