Post 61: The "Supportive Family" - Two Perspectives on Support
Updated: Nov 2, 2022
I stepped into the patient's home as the man behind the door said, "I'm so glad you're here. I don't know what to do." He shut the front door and extended his arm to the sitting room. "I'm Peter, the husband. Sandra's in the bathroom. Are you the doctor?"
"Yes, I'm Doctor L. I'm a palliative care doctor. I don't know how much your wife's primary care doctor explain what I do - "
"No, not really anything. I didn't even know doctors could do home visits! All I know is that my wife is not doing well, and I don't know what to do. I've been sitting here, waiting since 8 o'clock to talk to you. Where do you want to sit?"
"Anywhere that's most comfortable for you and Sandra is fine," I replied, "I can explain what I do, and we can go from there."
"That sounds good."
I explained briefly how my role as a palliative care specialist differs from that of Sandra's primary care doctor (read Post 1: What Exactly Does a Palliative Care Specialist Do?), and he rapidly nodded, "Yes, yes, she needs all the support she can get."
"What do you want to make sure we talk about today?"
"Well, Sandra sleeps all day now. She's lost so much weight, and she's tired all the time. You know, she was diagnosed with stage 4 lung cancer when she was hospitalized last month. The diagnosis came out of the blue! She went in to finish her preop workup for knee surgery and came out with this cancer diagnosis! She went to rehab after that hospitalization, but she still needs help with almost everything. She tells me she doesn't want to do physical therapy and that she doesn't want to go back to Dr. R. I tell her she has to so Dr. R - that's her cancer doctor - can see how she's doing. I ask her if she wants to stop cancer treatments, and she doesn't answer me. Then when her brothers and sister come over, they tell her to stay strong, and she nods along. They ask me why she's losing weight like I'm not already asking her every hour to take a bite of something! She doesn't tell them that she doesn't want to eat. She doesn't tell them she doesn't want to do physical therapy. She just nods when they tell her to keep going and stay strong."
"What about other family members such as children?" I ask.
"Oh, we never had children. It's just me. And her siblings."
"And how have you been coping the past month, learning Sandra has advanced cancer and now trying your best to act as her caregiver day and night."
"I'm...I'm okay. I mean I have to do this. I'm her husband. And we don't have anyone else. I do have a cousin, who helps get groceries and stuff, and Sandra has her siblings, but it's me who's here every day. Doctor, let me ask you something. My cousin mentioned something about 'hospice.' What do you think about that? Would that be too drastic?"
"That's a good question. Let's step back a little before I answer that question. It would be helpful for me to know - at this point, what do you want for your wife?"
Peter paused and replied, "I just want to do whatever she wants. Like, what she really wants, not necessarily what she says she wants because I don't think she's being honest with us."
"Okay, if Sandra is done with the bathroom, I can go talk to her and try to get a sense of what's important to her at this time (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2)."
"That would be great!"
"Do you want to come with me, or do you want me to talk to her on my own?"
"Ummmm, I think she'd be more open and honest if it were just you. Is it okay if I wait out here and you talk to her in the bedroom? I'll tell her you're coming in."
"Hi Ms. Sandra, I'm Doctor L," I introduced myself as I stepped into her bedroom.
Sandra glanced at me, looking fatigued. She was sitting up in bed with her legs under the covers of her bed. Looking at her wary expression, I could tell she did not want to have any "big" discussions today (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing). I think to myself, "She's probably so tired of talking about bad news and life altering decisions. She's got that 'What now?!' look."
Out loud, I tried to reassure her, "I talked to Peter while you were in the bathroom, and he already told me about the medical stuff. Peter said he told you I was here for your appointment? I just want to ask you a few questions - if that's okay - and then I'll step out. It sounds like you've had a really busy week already with doctors' appointments and therapies."
"Okay," Sandra said looking down at her bedspread, "A few questions is okay."
"I was wondering...Ms. Sandra, honestly, what would you say if tomorrow your two brothers and your sister came to see you and said, 'Let's not go to chemotherapy today. Let's just hang out at home!'"
Sandra immediately looked up with an animated expression on her face. "That would be...good! I would like that."
"Okay...and if your two brothers and your sister were to say, 'Sandra, let's not struggle to make it to Dr. R's office again. Instead of chemotherapy, doctors' appointments, and physical therapy, let's focus on you being comfortable and spending each day the way you want to spend it. Let's ask a good hospice team to help us make that happen.' What would you say to that?"
Sandra smiled. "That sounds really nice."
"Okay, that's very helpful for me to know so I know what kind of medical recommendations to make for you, your family, and your other doctors. Have you ever discussed these thoughts with your family?"
Sandra's face dropped, and she shook her head. "I haven't talked about this with them. It's hard because they want me to keep fighting...."
Sandra's voice drifted off and she stopped talking. When it did not seem like Sandra was going to add more, I asked her, "I saw that Peter is your medical power of attorney [see Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]. If it's okay with you, I would like to talk to Peter about this conversation. I would also like to discuss a plan on how we can approach your siblings about this conversation."
"Yes, please, thank you."
"Do you want me to come back and talk to you about next steps? Or do you trust Peter to take care of next steps?" I asked.
"No," Sandra replied, and she waved bye once from her bed, "I trust Peter. Thank you for coming, Dr. L."
"Hi, Peter," I smiled at Sandra's husband sitting at their dining room table, "Sandra was understandably tired and didn't want a long conversation, but we still managed to have a very good talk."
"Yes," I sat down catty cornered from Peter, "First of all, I just want to say you're doing an excellent job questioning if the current medical care is really in line with what Sandra wants (read Post 20: How Do You Make Medical Decisions for Someone Other Than Yourself? - Five Common Methods). Your questions enabled me to approach Sandra a little differently today." I relayed to Peter the questions I had asked Sandra.
Peter leaned forward, "What did she say?"
"Well, the only time Sandra smiled or perked up was when we talked about letting go of chemotherapy, doctors' appointments, and physical therapy. I thought that was very telling. She said those were what she would honestly want."
Peter nodded, "Uh hmm. Uh hmm."
"And she also told me that she has not told you or her brothers and sister about her true wishes."
"No," Peter shook his head, "She hasn't. But I'm not surprised she said what she said. She's just so tired."
"How do you want to support her, now that you know what she wants?"
"I want to do whatever she wants! But I'm worried she's going to say the opposite when her brothers and sister come around. She'll especially do whatever her baby brother wants to do. Well, he's not a baby - he's 54! - but you know what I mean."
"It sounds like Sandra has a very supportive family, with you and her siblings."
"What kind of support is Sandra getting? Are her family telling her, 'You can do it!' and 'Be positive! Stay strong!' and 'Fight! You're a fighter! Fight for us!'? Or are her family telling her, 'I'll support whatever decision you make. You want to keep going, we'll keeping going. You want to give it a rest, we give it a rest'?"
Peter thoughtfully nodded his head in understanding, "It's the first one. Definitely the first one."
"It sounds like Sandra's family have so much love for her, and Sandra has so much love for her family. Sounds like she's trying to make medical decisions in an attempt to comfort her family, out of love and perhaps a sense of obligation too (read Post 18: Decisions Based on Love Can Be the Hardest to Support)."
"Yeah." We sit in silence for a moment. Peter asked, "So what do we do?"
"We honor her wishes and her decisions. We tell her siblings about today's visit. We ask her siblings, especially her younger brother, to have a true heart-to-heart with her. We can let them know that certain words can be said with the best of intentions and end up being unintentionally isolating (read Post 46: How Being a "Fighter" Can Alter Your Path). If Sandra says she wants to focus on comfort, we make that happen. If Sandra says she wants to keep doing what she's doing now, whether or not it's for the sake of her family, we support her in this the best we can, and we continue to have these conversations, letting her know it's okay if she were to change her mind in the future."
"Okay, that works for me! I'll call a family meeting and let them know everything we discussed today. I'll talk to her brothers and sister about really listening to what she has to say. They're very supportive; it's just maybe they need to show their support a little differently (read Post 65: Optimism and Hope). Then maybe we can get a true picture of what Sandra really wants to do."
"That sounds like a great plan. I would also suggest a hospice education visit so that you and your in-laws can get a better idea of exactly how a hospice team could help you support Sandra if Sandra were to decide she wanted to focus on comfort and time at home with family rather than going out to appointments. You can even meet with several hospice agencies to get a sense of which agency would be the best fit for you (read Post 2: Five Major Ways Palliative Care Differs from Hospice)."
"Okay, sure! We'll do that too. We'll meet with two or three hospice agencies and get more information," Peter paused, "Dr. L, I'm so glad you came by today. I felt so lost this morning, and now I feel like I know how I can help my wife. It's a gift."