(We all experience denial at various points in our lives. Some moments may be short lived - the shock and disbelief in witnessing a sudden horrific crash - and some may last months or years - the unwillingness to get checked out for that bloody urine that has been ongoing for a couple months. Read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing.
At some point, we may feel frustrated when attempting to speak with a family member or close friend who is in denial, whether it be about a life event or a medical situation. The approaches described below are suggestions to address any of those situations, not just related to medical.)
Maria greets me into her home, talking animatedly about her and her husband's plans to check out a new movie later that evening. I am a little taken aback because I am there to do a home visit with her husband, Eric, for a new patient palliative care consultation (read Post 1: What Exactly Does a Palliative Care Specialist Do?).
"Eric!" Maria calls out, "The doctor is here!" I watch as the 59 year old man with thick brown and grey hair and youthful face appear from a nearby room and start making his way to the living room couch, where I am seated. He is slow and deliberate with his steps, holding onto Maria's arm. I notice his bathrobe is covering a large, round abdomen.
"I'm scheduled to get this fluid taken out of my belly tomorrow," Eric explains, "Until then, it's hard to get around."
Eric had just been diagnosed with cirrhosis, which is extensive scarring of the liver due to repeated damage, such as from a virus, inflammation, or alcohol, to healthy liver cells over time. When the scarring has replaced so much healthy liver tissue that the liver can no longer function the way it normally does, the person has liver failure.
"My cirrhosis is not related to alcohol! Never drank," Eric makes sure to tell me to write this down and he sits back on the couch.
Maria takes over for him. "He got diagnosed last month at the hospital. It was a shock to us. I mean, we knew something wasn't right. He was so tired, and his belly was swelling so fast. It's like he became 7 months pregnant in a week!"
"So all of this is still very new to you."
"Yes! We are going to see the liver specialist later this week. We want a liver transplant as soon as possible. We can't live like this. We're normally very active, and this is holding us back. We'll fight for this liver transplant, and then hopefully we can resume traveling next year," Maria firmly declares.
Approach #1. If you suspect a person is in denial, be persistent in trying to address concerns. Be persistent in frequency. If you don't get far with one approach, try again at a another time, perhaps with a different approach.
"I hope you get the response that you want from the liver specialist," I pause a moment, "Can I ask you if you've thought about 'what ifs?' Have you thought about what might happen if, for whatever reason, Eric does not qualify for a liver transplant or does not get a liver transplant?"
"No, not really."
"Some people do get their liver transplant, and some people are not able to. What do you think about this possibility?"
Eric frowns but stays silent. Maria's smile falters and she says, "We're not going to think about that. We're going to stay positive and get through this."
I look at Eric, who nods at me. "Okay. Let's see what the liver specialist says. I know you're mainly waiting for that visit. Depending on what he says, we can go from there. Would that be okay?"
"Oh yes! That would be fine," Maria's smile returns and she nods her head towards Eric for his agreement.
Eric and Maria see the liver specialist later that week, and they learn that the blood tests for Eric's liver failure are not "bad enough" for Eric to be listed on the transplant list.
Approach #2. Engage for as long as you can if you are truly concerned about a person in denial, and back off when the person becomes irritated. When a person lashes out in defensive anger, the conversation will not progress. Perhaps attempt a different approach next time.
I comment on my next visit with Eric a month later, "I'm glad Eric feels better today after his paracentesis (a procedure that does not require hospitalization, in which a needle guided by ultrasound is used to puncture the abdominal cavity to draw out extra fluid that has accumulated in the abdominal cavity - "the belly" - due to liver failure)."
Eric responds, "Yes, they removed over 8 liters. Last time, they removed 8.5 liters. The liver specialist, Dr. L, has scheduled for me to go to interventional radiology and get a paracentesis every two weeks."
"So how did the meeting go with Dr. L? What else did you talk about?"
"He said he would keep monitoring my labs. He reminded me to not miss a dose of the diuretics or lactulose. I'm supposed to get a scope done in two weeks, the one where he sticks a camera down my throat and esophagus to look at my stomach. He wants to see if they've been affected by the cirrhosis."
"That's great you have a follow up plan with Dr. L, " I turn towards Maria, "Maria, I remember you had been insistent that they use part of your liver to transplant. Did you ask Dr. L about that?"
"Yes," Maria replies, "He said Eric's liver failure is to the point that he would need a whole liver. Dr. L was very thorough and explained everything."
"I'm glad Dr. L was able to answer all your questions, though what he said must have been disappointing to hear."
"It was," Maria sighs.
"I see people who end up getting a transplant, and I also see people who do not. Can I ask - did Dr. L discuss what might happen if someone did not get a liver transplant? "
"No," Maria and Eric both shake their heads.
"Did he bring up prognosis, or life expectancy, ranges for people who have the same disease you have who end up not getting a liver transplant?"
"No," Maria sits up and exclaims loudly, "and we're really not interested in talking about that. We're just going to focus on being positive."
"Okay," I say, "that's good to know. It sounds like what would be most helpful to you at this time would be to take things day by day rather than thinking about various future possibilities."
"Exactly," Maria relaxes, "That is exactly how we're taking things. Day by day and staying positive."
Approach #3. Use "I" statements rather than "you" statements, which can sound accusatory and may cause a person to become defensive and overreact.
Eric maintains a routine for the next couple months, and he diligently takes his medications and follows up with his specialists. He appreciates the days immediately following fluid removal from his expanded abdomen - "I can breathe! I can move! I can paint!" - and does his best to struggle through the days immediately prior to a scheduled paracentesis - "I can't breathe. I can't move. I can't do anything but wait for tomorrow's paracentesis. They're removing 7 to 10 liters of fluid from my belly every time."
Dr. L recommends a procedure to possibly reduce the rapid build up of excess fluid in Eric's abdominal cavity. "He said the interventional radiologist would go in through a large vein in my neck and push a camera through to look at the veins in my liver. He would put a stent connecting the portal vein to a liver vein - I forget the exact names - and that will hopefully allow blood from the intestines flowing through the portal vein to bypass the liver and flow straight to the big liver vein that leads to my heart. The stent is supposed to allow blood to flow more easily from my intestines to my heart by bypassing the liver which isn't working anyway. Then there'll be less backup of fluid and less pressure that's causing excess fluid to leak from my intestines and liver into the abdominal cavity," Eric looks at me, "Does this sound about right?"
"Yes! That's a great explanation of the procedure," I reply.
Eric undergoes the liver procedure, and he then has another rough month. He is hospitalized twice for critical confusion ("hepatic encephalopathy") due to build up of toxins that his severely diseased liver is unable to detoxify.
"Well, the procedure is doing what it was supposed to do," Maria sniffs into a tissue, "Eric hasn't need another paracentesis so far. But now this encephalopathy is the issue, and it's so much scarier than the fluid. Last time I couldn't even wake up Eric he was so out of it!"
"It sounds like the past month you and Eric have had some scary times."
"Yes. I don't know if these episodes are because of side effects from the liver procedure or from worsening cirrhosis. They did say encephalopathy would be a possible side effect."
I listen to Maria describe her emotional rollercoaster of the past month while Eric rests in his bed.
"Maria," I say, "I hope Eric doesn't have another hospitalization for a long time. I hope that he is stable and that he can remain at home. I am worried that it could also go the other way and that Eric may become delirious again or develop some other complication from the liver failure. Has anyone at the hospital talked to you or Eric about what could possibly happen?"
"No," said Maria, "and I don't know if I'm ready to talk about any of that. It's just too much to think about."
"Okay," I pause, "I think at the very least we should re-discuss the two advance directive forms I went over earlier [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA) and read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ]. Best case scenario is Eric completes a medical power of attorney form that does not have to come into play. At least, he could have the peace of mind of knowing that he has protected you and your decision making right by making sure you have a legal document stating you can make healthcare decisions for him when he's confused. Worst case scenario, Eric becomes confused again and he is hospitalized again and you have to show the MPOA form to the paramedics. I know so far the paramedics have been listening to you. There might come a time when a paramedic or a doctor questions your right to make healthcare decisions for Eric. That's when you would show them your copy of the MPOA form."
"Yeah, actually the paramedics did ask to see Eric's medical power of attorney form the first time he got confused because he kept saying he didn't want to go to the hospital. I had to argue with the paramedics that Eric didn't know what he was saying because he was so out of it. I think it's time to have Eric complete the MPOA form."
"And -"
"But he's still a full code! We don't need to discuss that again."
"Okay. I may bring it up at a future time if Eric's situation looks different."
Maria looks at me and sharply replies, "Fine."
Approach #4. Actively listen to the person's overwhelming fears and anxieties. Rephrase what you hear to demonstrate that you are listening and not judging. Allow a safe environment for them to discuss their fears, whether or not they seem rational to you. Keep your own reactive emotions in check.
After several months, Eric is doing very well and not requiring any more hospitalizations nor procedures related to his cirrhosis. He still does not drive, but he feels comfortable leaving the house. He and Maria go out to eat a couple times each week. They watch a movie at the movie theatre a couple times each month. He has resumed his hobby of painting every day.
"I feel great!" he says.
We agree that he does not need palliative care support at this time, and he "graduates" from the palliative care program.
Six months later, I am asked to see Eric again by his primary care physician (PCP). "He's been hospitalized four times in the past three months. Can you help?" his PCP asks.
This time, Eric is notably changed from the last time I had seen him. He shuffles to the living room couch holding onto Maria and breathes heavily for a few minutes from the exertion. He keeps his eyes closed for much of the visit. He does open his eyes and softly answers me when I directly ask him questions.
Maria has changed too. She is much more subdued. "This is a good day for Eric."
"This is a good day?" I ask, glancing at Eric slouching next to me on the couch with his eyes closed.
"Yes, normally I have a hard time getting him out of bed and he'll just give me one word answers. Today, we took a shower and he's talking more. I think he got motivated when he heard you were coming!"
"Well then, that's wonderful that he's having a good day today!"
"Yes," Maria nods her ahead and falls silent.
"It seems to me some things are on your mind. Is there anything in particular you want to discuss today?"
"We saw Dr. L last week. He said he didn't know if Eric would survive a liver transplant surgery."
"Oh. How did you feel when you heard that?" I ask.
"I wasn't too surprised. I told him Eric would accept a liver transplant if it were ever offered to him. And if not, then we can still be aggressive with his other medical problems. We'd still see his specialists and his PCP. We'd still do therapy. We wouldn't just give up."
"Is there anything in particular you're worried about?"
Maria thinks for a moment, "I guess I just don't want everyone to give up on Eric. He's a fighter. He's very strong."
"And what would giving up look like to you?"
"Giving up would be everyone abandoning and ignoring Eric. He's a good man, and he deserves the best medical care until the very end."
"Yes. I agree Eric should receive the best medical care at all times."
Approach #5. Use sideways approaches, including enlisting others to help.
"I know you're close with Eric's parents. What have they said would be the best care for Eric at this time?" I ask Maria.
Maria responds, "Well, they hear Eric say that he's tired and that he wouldn't want a liver transplant, and it makes them sad. They want Eric to be comfortable and to be kept at home, and I want this too. His parents also agree with Dr. L. They don't think Eric would survive such a big operation, especially if Eric is not motivated to go through with it right now. But they said they would support whatever decision I made."
"That is good to hear, that Eric's parents trust you to make whatever decisions you need to make to keep Eric comfortable and safe at home."
"Yeah, they're wonderful. I'm closer to them than to my own parents."
Approach #6. Instead of making "You should..." statements, which a person in denial can interpret as unwanted advice, make suggestions ("I wonder if you could...") and give advice tactfully.
Cautiously, I comment, "Sometimes when a person's medical situation and quality of life change, they start to think that constantly leaving the house to see specialists and to visit the emergency room for yet another issue is not helping them. They start to think that all the visits, tests, scans, x-rays, and procedures are more burdensome than helpful."
Maria nods in understanding.
I continue, "When people start to think this way, hospice support at home can be very helpful (read Post 2: Five Major Ways Palliative Care Differs from Hospice). Hospice is the maximum medical care given at home for comfort, where the hospice team brings medications and equipment to the home and help family members keep their loved ones comfortable in a familiar, calm environment. Hospice becomes the new 911 so that they can be called on a Saturday night rather than family members panicking and taking a loved one to the hospital, which can get loud and chaotic."
Maria nods again in thought.
"I wonder if meeting with a couple hospice agencies to see what they had to offer Eric would be helpful to you. At no point should Eric ever be ignored. Different specialists provide the best possible medical care depending on Eric's medical issues. If the medical issue now is keeping Eric's symptoms controlled and keeping him at home, then the specialists with the greatest expertise in that area would be a hospice team."
"I'll meet with a couple hospice agencies, " Maria says, "Just to see what our options are. We're still going to see our specialists in the meantime."
"That's fine," I reassure her, "Whatever feels right for Eric and for you."
Approach #7. Allow the person to see how a situation has become so bad that the issue must be addressed.
The following week I receive a message that Maria is requesting a callback. "Hi Maria, I saw you had left a message that I give you a call?"
"Hi, thank you for calling me back. Eric couldn't get out of bed this morning. He was like dead weight. And he looked me in the eye and he said, 'I'm not confused. I'm tired. Please don't call the paramedics.' What should I do?"
"Maria, I remember you had told me that what you want most for Eric at this time is for him to be comfortable, remain at home, and receive the best care and attention possible."
"Yes, that's it."
"If Eric went to the hospital right now, do you think he would get any of those things you want most for him?"
"No."
"I think the best medical care for him right now would be hospice support at home."
"I agree. One of the hospice agencies had given me a call last week, and I hadn't had the chance to call them back. I'll give them a call right now."
"Okay, that sounds like a plan. Maria, I just want to say, you are being such a strong advocate for Eric, and that is something to be proud of."
"Thank you so much," Maria pauses, "When I was in denial, it was hard. And I was in denial for so long. I was paralyzed with panic. In a way, things became easier after I got over my denial. I just want to thank you for listening to me and listening to Eric and helping us through all of this."
(Attempting to personally help a loved one in denial - as opposed to attempting to professionally help a patient in denial - can be especially emotionally draining, resulting in feelings of frustration, helplessness, and being overwhelmed. I would add another piece of advice when attempting to help a loved one in denial.
While the family member or close friend may repeatedly attempt to mindfully bring up their worries about their loved one's situation - with the hope that one day, their loved one will be more open to talking - the family member or close friend may have to set boundaries. Consider supporting only as much as you can physically and emotionally support without it negatively affecting your own physical and emotional health, the health of the rest of the family, and your work.)