Post 27: When to Consider Hospice Support - Example #3
Updated: Nov 27, 2022
"I feel hope now that we have a plan."
"I'm tired of coming back to the hospital. I want to get off this merry go round," Ms. W frankly responds when I ask her how she is doing.
Her hospitalist, which is an internist who takes care of patients while they are admitted to the hospital and then relinquishes care back to the primary care physician when patients are discharged from the hospital, had asked that I see Ms. W for a palliative care consultation (read Post 1: What Exactly Does a Palliative Care Specialist Do?).
Ms. W is a 65 year old woman who lives on her own. "I live for the weekends when my two grandchildren come over." She had worked hard to cut her smoking down from a pack a day to none as of a couple months ago. "I think about it a lot. I think about smoking just one. Then I think about my ten year old grandson picking up a cigarette and I shudder," Ms. W states in anticipation of my question.
This is Ms. W's fourth hospitalization in six months for chronic obstructive pulmonary disease (COPD) flare up. COPD is a type of lung disease that frequently causes blockage of airflow from the lungs. "No offense, but I don't want to come back to the hospital. I don't want to keep seeing the same faces. But when I feel like I'm suffocating, or like I can't catch my breath, I'm not going to just sit there. I have to call 911."
"What has your pulmonologist said about your COPD?" I ask.
"He says it's severe. I asked if it was end stage, and he...actually, I'm not sure if he really answered that. He said he wouldn't ever recommend I get on the ventilator because I would probably get stuck on it. My lungs are so bad they wouldn't be able to breathe on their own."
"How did you feel when you heard that?"
Ms. W sighs, "To be honest, not good. But I'm not surprised. I'm just angry at myself. Even when I knew better, I kept smoking." Ms. W looks down and shakes her head.
"You've worked really hard to stop smoking. I wouldn't discount that. And you're asking the pulmonologist all the right questions since it sounds like you're the type to want to know what to expect."
"Yeah, that's right."
"Can I ask, at this point in your life, knowing what you know about your COPD and how you've been doing, what matters the most to you (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2)?"
"I want to stay home. I want to not miss another weekend with my grandbabies. I want to be able to walk to the kitchen to get them a snack without having to stop to catch my breath. I really want to not have to come back again to the hospital."
"It sounds like staying at home, maximizing time with your family, and maintaining as much independence as possible are important to you."
I pause. "Ms. W, I'm going to ask you a tough question. "
I ask Ms. W, "Has your pulmonologist, primary care physician, or hospitalist ever mentioned when to consider hospice support at home?"
"No. Isn't hospice a place they take you to die? I'm not bedbound, so I don't think I'm ready for hospice yet."
"Ms. W, many people have misconceptions about hospice. Let me clarify those misconceptions for you. I think knowing about hospice support at home would be a good thing to keep in your back pocket for when you think it may be time to be evaluated for hospice support (read Post 2: Five Major Ways Palliative Care Differs from Hospice)."
"Okay, sure. Whatever you think would help me."
"Hospice is not a place to die. Hospice is a program that follows you where ever you are. In fact, most hospice support in the United States is brought to the patient's home. Now hospice is not caregiving. Family, friends, or paid providers continue to provide the caregiving. Hospice provides all the medications for relief of symptoms, equipment to ease day to day activities like a hospital bed or oxygen if needed, and staff such as a hospice nurse to educate family and friends if they have questions on how to manage symptoms, an aide to help with bathing, a chaplain or volunteers for any person or family member who wants to talk, and a social worker to provide guidance in many areas including talking to children about difficult topics."
"Oh, that would be helpful. My grandchildren know their grandma gets sick sometimes and has to go to the hospital. I want them to also know that no matter what happens to me, I'll always love them. I want to tell them that without scaring them."
"Clearly having meaningful time with your grandchildren and your family are very important to you."
"Yes, it is."
"Now some people might say, 'You know what? Going to the hospital is not working for me. I don't feel much better. Or I'm tired of going back to the hospital for the same reasons. My disease is bad and it's just getting worse. If I were to get really sick the next time, I wouldn't want to go back to the hospital. I would want medical care brought to me in my home. I want the breathing treatments, oral medications, oxygen, whatever is needed to get me through my next flare up, brought to me at home. The labs, scans, IVs in the hospital - they're more burdensome than helpful. Just do what you can in my home. Maximize my time at home.'" "That's how I feel! That's what I would want."
"People in hospice prioritize comfort and peace over life prolonging treatments. So a person in hospice would say, 'If all those treatments at home didn't work, then give me medications to keep me from suffering. Continue to make me as comfortable as you can. If it's my time to die, it's my time to die.' If a person were to say, 'I want equipment to keep me breathing, monitors to track my vital signs, and as many tests as necessary to figure out what's going on,' then usually they go to the hospital. What they want would not align with what hospice could give them."
"I know you've already discussed your resuscitation wishes with Dr. L (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ). I heard that you would not want resuscitation attempts, and I see a Do Not Attempt Resuscitation - sometimes called DNAR or DNR - band on your wrist."
"Have you thought about doctors using breathing equipment such as BIPAP - you remember the mask that you said pushed a lot of air pressure onto your face the last time you were here for COPD flare? - to get you past a severe breathing episode?"
"I have. And this may come as a surprise to my daughter - I guess I'll have to talk to her about it - but I don't want to go through that again. I wouldn't want the BIPAP."
"So if you were still uncomfortably short of breath after breathing treatments and pill medications and oxygen, you would prefer to be given medications, such as morphine, to ease the shortness of breath and medications to calm the anxiety?"
"I would. I've never said it out loud, but I've been thinking about it a lot recently. I'm tired. I'm really, really tired. I've lived a good life. My only regret is the smoking. I'm angry at myself for that," Ms. W clucks angrily, "But yes, I get so short of breath, I can't shower. I have to wipe myself down the best I can. Using the bedside commode takes a lot out of me. My whole day is spent planning how I'm going to make it through an activity that most people take for granted. I can never just DO. I have to think through each step. Getting dressed took me two hours last week! And my appetite's gone. I think it's because I'm always thinking about breathing. This is no way to live...I will miss my grandbabies, though."
"It sounds like, at this point, you would want all medical care for your COPD and comfort to be brought to your home so that you would not have to go to the hospital for any reason."
"That's right. I guess that's what I'm trying to say."
"I think hospice support at home would be the best way to get you what you want. I want to clarify, also, other things I heard you say. A person does not need to be bedbound to be eligible for hospice support at home. They could still be hiking in the woods. They could travel to the next state to make it to a family reunion. They do need to have a prognosis that, on paper, is on average six months or less. An individual person may die much later or much sooner than the average."
"Oh ok, I didn't know that. That's good to know."
"Also, this decision is not final. A person can revoke hospice if they were to change their mind and think going to the hospital and going to clinic to see specialists would be more beneficial than burdensome. If they changed their minds again to focus on comfort, then they could be re-evaluated for hospice support at home."
"OH! Well then, why not get hospice involved? Let's do it! If I can change my mind anytime, let's give hospice a try."
"Okay, so I'll ask one of the hospice agencies to meet with you today or tomorrow and answer any questions you may have. They will first call to ask when would be a good time for you. Perhaps you can make it a time when your daughter could be available, either in person at the hospital or via speaker phone, so she could ask questions as well. "
"That's a good idea."
"Would you like me to talk to your daughter about what we discussed?"
"Actually, she's probably on her lunch break now and will be calling me soon. Can we call her now and you tell her what we talked about?"
"I cannot say how much at peace I feel now. I've been feeling so -, so TRAPPED, and now I feel like I've got some control back. I was starting to think that this was all there was to it and that I was going to have to come back to the hospital again and again until one day I just wouldn't make it, but now... now I know it doesn't have to be that way! I feel hope now that we have a plan. I can't thank you enough for that."