This month I am featuring a series of posts about aging, health crises, and (possible) end-of-life situations. Earlier this week, I shared the story of Mrs. F, a very ill older woman with cancer who said she didn’t want to go to the hospital, even though she wasn’t on hospice.
Now, I want to share another true story, about a nonagenarian with cancer. He was DNR and we had planned for comfort care once his symptoms got worse. But when he fell dangerously ill, I ended up advocating for him to go to the Intensive Care Unit. Below is the story, with tips for caregivers at the end.
[This story was first published in 2010, on Caring.com’s Older Patients Wiser Care blog.]
The case: An unlikely candidate for intensive care
Some people in their 90s are lucky enough to still be strong and independent, but Mr. H wasn’t one of them. He’d been wheelchair-bound ever since a bad hip fracture a few years prior cost him his ability to walk. He also had mild dementia, which made him somewhat forgetful and disorganized.
Nonetheless, this WWII veteran was a perennially cheerful presence in our VA’s Nursing Home Care Unit, always eager to join in on activities and outings. “Thank God for the VA!” he’d tell me when I’d come see him for his monthly medical check-ups.
But his smile faded the day we explained that we’d discovered a colon cancer, which had spread to his liver.
For years, Mr. H’s records showed he wanted do-not-resuscitate/do-not-intubate (DNR/DNI). Now that he had advanced cancer, he and his son asked that all future medical care focus on maintaining comfort, function, and quality of life for as long as possible. Treatment of infections was okay if we thought there was a good chance of success. And they wanted to consider hospice once Mr. H was having more pain or other end-of-life symptoms.
Being the cheerful and forgetful type, Mr. H was soon back to his usual activities in the nursing home. Over the next three months, we all practically forgot he had advanced cancer.
That is, until the day that nurses found him weak and feverish in bed, with low blood pressure. The ER doctors found that Mr. H had a bad urinary tract infection (UTI) and IV antibiotics were started. When his blood pressure continued to drop, the Intensive Care Unit (ICU) team was called: When bad infections cause life-threatening low blood pressure, patients need ICU care.
The ICU doctor, however, balked. “He’s very old, has metastatic cancer, is DNR/DNI, and from his chart it looks like his family doesn’t want any invasive procedures. So he’s not appropriate for the ICU.”
In his gurney, Mr. H looked at us quizzically. Despite his very low blood pressure, he was still awake and weakly smiling. But without special blood pressure medications (known as pressors) only available in the ICU, the medical staff knew it was incredibly unlikely that he’d survive this common infection.
The challenge: It’s not always easy to turn goals and care plans into actions
The ICU doctor had a legitimate point. The goals of Mr. H’s medical care were supposed to be maintenance of comfort, function, and quality of life. For elderly people with advanced cancer, who are unlikely to live more than several months no matter what medical care they get, ICU-level care generally doesn’t help advance those goals.
Still, I found myself hesitating to switch to comfort care. Despite his many medical problems, Mr. H had been maintaining his function and his quality of life. Like many people with advanced illness, Mr. H had said he’d prefer to be treated for reversible medical problems, such as infections, especially if the chance of recovery were good, and the treatment wouldn’t be too burdensome. I felt that with pressors and antibiotics he had a decent shot at recovery from his UTI.
The catch was that Mr. H had more than a garden-variety UTI. Whereas many UTIs can be treated with oral antibiotics, Mr. H’s infection had spread to his bloodstream. To treat it, he would need to have a central catheter threaded into one of the big veins of his neck or groin; it’s not possible to give pressors through the more common small IVs that are placed in the hand or arm. But would he find a central catheter, and ICU care, too burdensome?
“Ask him what he thinks,” said the ER doctor.
“You’re my doctor. I trust you to tell me what to do,” quavered Mr. H.
The solution: A limited trial of intensive care to balance the benefits and burdens
We were running out of time to discuss: Mr. H’s blood pressure kept dropping. I called his son. “Normally I don’t recommend ICU care for people of his age and medical condition,” I said, “but in this particular case, one reasonable option would be to try 24 to 48 hours of ICU care, to see if we can turn him around. He might get better. But if he gets worse, we would make him as comfortable as possible until he dies.”
The son agreed, and Mr. H was whisked up to the ICU.
The next day, I found him sitting up with a breakfast tray, his central catheter taped to the side of his neck. After 12 hours of pressors and antibiotics, his fever had gone away, and his blood pressure had improved to the point he no longer needed the pressors.
“The nurses have been nice but I don’t like it here,” he complained. “Can I go back to the nursing home today?”
Three days later, Mr. H was discharged back there, where he re-engaged in his favorite activities and remained active for another 10 weeks. Eventually he became weaker and was transitioned to hospice.
He died peacefully in his bed, five months to the day after his admission to the ICU.
My take-home points for family caregivers:
- Be sure to re-address goals of care after a new major medical diagnosis or significant chance in health status.
- Know that even among people with advanced illnesses, it’s often reasonable to treat reversible medical problems such as UTIs, especially if the treatment isn’t too burdensome and there’s a good chance of recovery.
- Understand that sometimes it can be hard to figure out just what is “too burdensome.” Reasonable doctors sometimes disagree about how good the chance of recovery is.
- If you and your loved one have agreed on a care plan focused on comfort and quality of life, expect that sudden illnesses or other declines in health will need to be discussed as they come up.
- It’s often reasonable to try a time-limited trial of more intensive treatment, with a plan to reassess within a day or two.
Have you ever struggled with how to manage a health crisis in a frail older person like Mr. H? I’d love to hear from you in the comments section below.
teresa fancher says
I will be 64 next month and have COPD stage 3. I am also the guardian of my mildly mentally disabled brother who is 60. He lives in a wonderful non profit group home. My niece has agreed to be his sussesor guradian when I die. I havent been to a lawyer as of now. She also knows at the end I DO NOT want him to see me on machines and trying to breathe and knowing the end if near. This is want we have agreed to. I really need to make her POA,his legal guardian and I need an advanced directive. I just dont know where or which one to start first
Leslie Kernisan, MD MPH says
If you want to address your own advance directive, I would recommend trying PrepareForYourCare.org, a wonderful website proven to help older adults think through issues relevant to preparing an advance directive. You can then inform your doctor that you’d like assistance preparing an advance directive; they should be able to assist.
I have additional resources on completing an advance directive here: Addressing Medical, Legal, & Financial Advance Care Planning.
In terms of changing the guardianship for your disabled brother, this is something I don’t know much about. I suspect you will eventually have to work with an attorney, but you can probably do some research on this topic beforehand. Try looking at websites for people caring for a developmentally disabled family member. Find out if there are any non-profits in your state or area who focus on such individuals and their families. Your situation sounds like something that other families will have encountered, so in your state there is probably a process to follow, and you should be able to learn more about it before consulting an attorney. Good luck!
Mark A says
Dad went to the Hospital from home, when one Monday he just was not acting and responding right. He had had a UTI and his Dr. was also treating him for PMR. Though in late April at his Wellness exam, his labs and all else were fine, except for a high sed rate. He used a walker independently, but then had a few falls, to a point we had to supervise. His underlying diagnosis was Vascular Dementia that surfaced after a Stroke, Christmas 2011 at 91. Prior to that he had never been in an Ambulance or spent a night in a Hospital.
At the Hospital they diagnosed Sepsis that seemed to be in the bladder area and a brain bleed that showed in the Cat Scan. He could not stay still enough so they could not do a MRI.
In one of his first falls, I suspect he fell out his chair while getting his walker and hit his head on the framework of the sliding door. We always told him to have his walker square in front of him before getting up and signs around that said the same. That was when things changed. Then there was the next fall. I had just rounded the corner of the hallway in the master bedroom to the bathroom, he was at the exit door and I saw him start to lose his balance backwards with the walker in front. I quickly estimated if I could get to him in time, to catch him. Could not. So I quickly scanned the area to see what he may hit. Nothing. He landed on his rump and the top of his back and shoulders took the brunt. Had him checked out. Nothing, Though I suspected soft tissue injuries, that he denied but I could read on his face at certain times or hear a gasp. I started giving him naproxen as a preventative and it seemed to help.
Anyway Dad had a DNR/POLST and other pertinent documents. They assigned a Palliative Care Dr. [after I pushed them on the pain issues, noted below] we made changes to the Document over the 9-10 days he was in the Hospital. Dad, shortly after arriving stopped eating [would not eat for me or my sister] and slipped into a non talkative/non responsive state. He went in on a Monday and it was Wednesday we stopped food and Friday stopped liquid. He was showing signs of severe pain, so he was getting something for that off and on. I have yet been unable to determine why he was not getting something regularly On that I had to push the issue to have them address it. At first they said it was something else and all elderly people do it? Huh? So I mentally prepared for him passing in the Hospital, as without the pain under control I could not take care of him at home. He was so loud when the waves of pain came I actually worried what the neighbors would think or if the Police would show up at the Door with a noise complaint. I actually brought that up with the Nurses and Doctors.
I asked have you observed him when he has one of these pain spasms? No. He’d yell out in pain, go into a fetal position and then put his hands over the area of his bladder and clutch it. They said that was normal in elderly people. I had my laptop and did some quick research and posted in some forums. Got responses and found authoritative articles/papers that equated the Sepsis and the Bladder. After revealing my sources, then I got action and they started pushing morphine and antibiotics again.
I was sitting with him on next Monday, a week later, at exactly 2:00pm and he sat up and said “I want to go home”. I moved closer and we had a very lucid talk for 30 minutes of what he would have to have done and what he had to do. He was in agreement.
In all of his Directives and what we had talked about over the years it stated no tubes, but he told me he would take one down the nose to stomach. I informed the Nurses of his wishes and they got him IV liquids and started the procedure to put a tube down his nose and they got it in place. I had to leave at 5 and he was still awake and talking with me since 2:00om, with some occasional short naps. Next day I came in he had pulled out the tube at 5:15pm the prior day and was awake. I was not surprised as he was a fiddler with things, when confused. So on Wednesday they did a swallow study and he passed and they had a lunch up to him with in 1/2 hour. He ate a full lunch, dinner, breakfast the next day. He was pretty alert that Tuesday and I left at 5:00pm. The following days, more nibbling. By Thursday he had slipped back into the non-responsive state. I made arrangements for him to come home on Friday under Hospice. He arrived home at 12:30pm. I had made the dining room into a bedroom. I had good light from outside, it overlooks a courtyard filled with plants and flowers, and it had good privacy. Set up the Stereo so he could hear his favorite station. He was still in a non-responsive/non-communicative state. So I did nothing about a TV. While in Hospital, he seemed better when music was playing on one of the TV stations.
I had outside help come in at 8:30pm and stay to 7:00am scheduled for the next week. Our regular caregiver was to be in Monday to Friday for 4 or more hours per day. When he came home I had our regular caregiver there for 8 hours to help me set up the area and so Dad would hear familiar voices.
He did pass away at home on Sunday morning 6/22 at 6:37am. The whole time home, he was comfortable, showed no signs of discomfort, though I had the drugs, did not have to use them as much as the Hospice Nurse led me to believe. She said that I would have to give him pain meds. every 1-2 hours? Except the Rx said “as needed”. He only showed a few signs of some pain and when he did I gave him some.
The Dr. at the Hospital screwed up, I never saw him on Thursday or Friday [I asked] [The Nurses were looking for him as Dad had something in the corner of his mouth that needed Dr. attention. Nurse came in 5-6 times and asked if the Dr. had come in. No. Finally she and another Nurse came in and she did something a Dr. is supposed to do. The other Nurse was a witness, as she did nothing other than observe. I was on the phone on the other side of the room, so not sure what they did.
And the Discharge Orders were incomplete. I had no idea as to what they had given him drug wise when he came home. In the Discharge Orders there were blank spots and he sent me home with scripts, that no one in the Tacoma/Seattle WA area could not fill on that Friday afternoon or any other day of the week. Even the Hospital Pharmacies. The Hospice Nurse tried, so she ended up substituting, with my having to leave to go pickup and wait for the meds. Subsequently I was never shown how to properly move Dad in his bed and some other things I needed to do when I would be alone with him. I spent hours at a Hospital Pharmacy the Hospice used, trying to get the right drugs.
I was also able to provide care above and beyond what he would have received in any other facility in his last days. Fortunately I have some pretty smart Caregivers and we put our minds together to fill the gaps that the Hospice Nurse had not covered.
As you state the DNR/POLST is not necessary written in stone. And if the patient wants it changed it can be changed. Those 9 days I spent a lot of time , at different times of the day/night at the hospital. I often wonder what would have happened if I had not been there at 2:00pm on that Monday.
I am still very happy to this day, that I was able to fulfill his wishes and bring him home. It was a lot of hard work and a lot of bobbing and weaving as to what to expect, but I would gladly do it again. It was a crazy 2 weeks as things changed by the hour. I have a habit when a crisis comes up of grabbing a yellow pad and starting to write dates, time, who and what. For the 2 weeks I have everything documented, contact information, what and where I was and more. Information on supplies, sources for special band-aids for those with thin skin for example. I know I went 2 periods that I was up for over 48 hours and probably one for 60-72 hours. But that is not new to me.
I hope this post helps others if their LO is under a DNR and things change while in the Hospital, NH or whatever facility so they can make the appropriate decisions. And I have been lengthy to show how quickly it can change for the worse. We are the advocates for our Loved Ones.
I just copied and pasted this in a word document, it is long and wordy. You can deleter if you wish. But I will leave as your post is about talking with Medical Personnel about changes in wishes. Sometimes, it is not possible to talk with them, no matter how hard one tries. Dad was at a good Hospital, but something happened where he slipped off the radar.
[Or he had been classified a difficult 94 year old patient because he was in pain that was not being controlled, he was loud, made lots of noise when they moved him, changed his underwear, took blood pressure and all the other little things. I heard noises from him I have never heard from him. He could hit his thumb square on and hard with a hammer, look at it and keep on working].
He had been there before for his first Stroke so they had access to those records. He had another Stroke like incident in May 2013 [that is what the F.A.S.T. test and some others I had on the Fridge showed one morning] and they had access to those records. And what started to be a somewhat routine affair: treat and stabilize Dad so he could come home in a few days, drug out to twice the hospital stay and lots of crisis’s in the end.
If it were not for some specific training I received years ago in one of my Careers, I am not certain what would have happened. I had to draw on the training to get results for my Dad. Training where you get the other person to do something and get them to think that they came up with the idea. And get them to analyze the best approach based on their training in doing this particular action. And where I do not care if I get any credit.
Leslie Kernisan, MD MPH says
Thank you for taking the time to share this story of how you helped shepherd your father through his last weeks. I hope your family and friends have given you credit for your efforts, as they sound substantial…and I’m sure they made a huge difference to your dad.
As you say, POLST and other advance care planning documents are not set in stone…they are part of a process meant to prepare you to better navigate the crises, when they come.
Thanks again for this comment.
Don Keene says
I almost feel guilty reading your posts because you give so much valuable information for free. But I’ll choke down my guilt and keep on reading and taking notes.
At the insistence of my doctor and attorney, I’ve struggled with crafting an effective end-of-life directive plan. Both my doctor and my attorney have pre-printed forms with little boxes for me to check. What your story illustrates is that one can’t check a box that fits all circumstances all the time.
Your suggestion of trying reasonable and not-too-burdensome procedures to treat reversible medical problems should be on pre-printed forms. My form now says “Transfer to hospital if indicated. Avoid intensive care if possible.”
Reading those words, it would have been easy for the ICU team to avoid sending Mr. H to intensive care. You gave Mr. H another 10 weeks of presumably comfortable living.
Leslie Kernisan, MD MPH says
I’m so glad to know that sharing this story has helped you think about your own advance care planning. No need to feel guilty! The main thing I need right now is for this information to find an audience that appreciates it, so if you can share the articles with others who find geriatrics health information useful, that is more than enough.
Otherwise, if you write “Transfer to hospital if indicated,” do consider offering some guidance as to what would make it “indicated.” For instance, explain what you hope your medical care will do for you, and then consider revising as your health/life situation evolves.
The POLST forms available in many states usually do have a “limited additional interventions” option (see here for a link to the CA form). This is better than the legalese in many stock directives, although it should be noted that POLST is meant to complement an advance directive and not replace it.
Hi, Dr. Kernisan,
I spent most of one day working out an advance directive for myself. I wanted to provide care providers with a clearer directive of what I wanted in order to minimize their “over-guessing” or “under-guessing.” I was able to incorporate some ideas you’ve mentioned in your posts.
I meet occasionally with several other older fellows. I think the advance-directive topic will be of interest to them.
Thanks so much for the incentive and the ideas for me to get this done.
By the way, Washington’s POLST is somewhat different than California’s POLST. I like California’s more than Washington’s.
Leslie Kernisan, MD MPH says
Yes, all states different, and some even call it MOLST (medical orders for life sustaining treatment) which is more accurate and less physician-centric.
Thanks again for the comments!