"When you go in to talk to him, don't use the 'H' word."
"The 'H' word?" I asked as I quickly thought of every profanity in my vocabulary, "Um, I'm not sure what that is."
"Yes . . . hospice," she whispered.
When I used to see patients in hospitals, sometimes the adult children or spouse would be the first to learn bad news about their loved one's health. This may have occurred because the patient was too confused at the time or overwhelmed with a multitude of tests. It may have occurred when highly involved family caregivers asked first when the patient was not available or if the patient was not English speaking.
"Yes, the CT scan did show cancer. That's why your mom has been having back pain," I might explain to a son, who might promptly respond, "Don't tell my mom."
Currently I see patients outside the hospital, usually in their homes, for palliative care consultations (read Post 1: What Exactly Does a Palliative Care Specialist Do?) and I sometimes hear patients say, "The doctor talks to my children and they tell me what the doctor says," or "My children interpret for me what the doctor says." As the patient visit progresses, I realize I am having two different conversations - one involving words coming out of the mouths of the patient and myself, and one involving widened eyes, raised eyebrows, and frequent shaking of the head from the adult child sitting behind the patient.
"So the doctor said that the CT scan showed something, but they're not sure what it is," I slowly repeat as the daughter behind her frantically mouths, "Don't say 'cancer'! Don't say 'cancer'!"
Sometimes the adult child, spouse, or other closely involved family member initially asks medical providers to refrain from sharing a particular diagnosis or prognosis with their loved one. It may be a reflex reaction or it may be a deliberate request. The concerned family member may later wonder, "Should we tell Mom about her diagnosis?"
The first step is to internally ask, "Honestly, why don't I want Mom to know?"
We do what we can to protect the ones we love. Many times family members want to withhold difficult news from a loved one because they are trying to prevent pain, sadness, anxiety, fear, or grief for their loved one. The following are examples of situations where I would support this decision.
Situation #1 "We are going to tell Mom about the abnormal CT results only if the biopsy comes back positive for cancer. Why should she worry now if it could end up being nothing?"
Situation #2 "Mom specifically told us she did not want to be told anything bad. She wants us to talk with the doctors and deal with it. She just wants us to tell her what to do."
Situation #3 "Mom won't understand the conversation, and she might get fixated only on the scary parts of the conversation. I am usually the one who talks to the doctors, and I simplify it for her later when we're at home."
Situation #4 "Mom's dementia is worsening, and she won't retain any new information. What would be the point of alarming her again and again if we're not going to go any further with it?"
If a patient has the mental ability to make their own decisions (read Post 10: Four Simple Questions to Determine if a Person is of Sound Mind), I listen to family members' specific concerns about not telling their loved one bad news and then I let them know that I will ask their loved one specifically how much their loved one wants to know.
The second step is to ask Mom, "How much information do you want to know right now? All the good and worrisome parts so you know everything that's going on? Or do you want me to talk to the doctors about the worrisome parts so you can focus on living each day at a time?"
Response #1 "I want to take it one day at a time. I don't need to know the stressful details. I don't need to dwell on bad news. I don't need someone putting a number on how long I have to live."
Response #2 "Tell me everything! I feel like everyone is tiptoeing around me, keeping secrets. It's my body. I want to know so I can be prepared."
For response #1, it is fine to honor a loved one's wishes. The concerned family member would then communicate with healthcare providers their loved one's preferences for the types of information their loved one would want, which healthcare providers may verify for themselves. The family member may become the person to discuss worrisome details and prognosis with their loved one's healthcare providers [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)], and they would also likely make the major decisions based on big picture information (read Post 20: How Do You Make Medical Decisions for Someone Other Than Yourself? - Five Common Methods).
Response #2 to a healthcare provider would likely result in the healthcare provider honoring the patient's wishes and providing all the information that the patient is requesting. I would ask family members to honor their loved one's wishes as well. As I mention in Post 29: How Do I Talk to My Kids About My Illness? - Seven Pieces of Advice, I will also mention here - how would you feel if you learned that important, life altering news had been kept from you for a long time by a person you trust?
No matter the decision, a patient is allowed to change their mind, especially as their mood and physical condition changes. The sick person, who may have just completed an exhausting physical therapy session or who may have just learned from the nephrology team that they indeed will have to start dialysis later that day, may not want to discuss bad news at that moment but change their mind on a different day. Family members should reassure their loved one that questions can be brought up at any time, whether it be with them (read Post 17: How to Discuss Serious, Difficult, Hard to Hear, Bad News in Six Steps) or with a trusted healthcare provider.
Preferences to discuss difficult news may change from person to person, from day–to-day (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing). When deliberating "Should we tell Mom?," hold off on making assumptions. Ask Mom how much she would want to know at the time, and let her responses give you guidance.