How might we help a sick older person have a better end-of-life experience? Planning for future health crises and end-of-life situations — a process known as advance care planning — is certainly important.
But, not every health crisis can be completely planned for. And it’s often hard, in the moment, for family members and doctors to figure out how to honor a person’s wishes. Below, I’d like to share a true story about a dangerously ill older woman, who wasn’t on hospice but said she didn’t want to go to the hospital.
The case: To ER or not to ER?
As I puttered around my house one Saturday morning, my pager went off. “Dr. Kernisan? This is Tina from the nursing home. We’re calling you about Mrs. F. She’s 78 and has a diagnosis of advanced lymphoma. She’s been anemic and just got a blood transfusion again a few days ago. She’s now very weak, pale, and her blood pressure is low. Her poop looks red.”
Although by then I had fired up my computer and was remotely logging in to Mrs. F’s chart, this sounded like a no-brainer. I didn’t know Mrs. F personally, but that weekend I was on call by phone for our medical group’s nursing home. From the brief description, Mrs. F sounded critically ill, and was probably bleeding internally. She needed hospitalization ASAP.
“But she says she doesn’t want to go to the ER,” the nurse continued. “She says she hates the hospital and wants to stay in the nursing home.”
This stopped me short. “Is there an advance directive in her chart? Is she usually able to make medical decisions?” I asked.
“It says she is DNR, but it looks like that was just decided a few weeks ago. It says transfer to the hospital is ok. It looks like she’s been offered hospice, but she hasn’t signed up for it. She does usually make medical decisions.”
I frowned at my computer screen, scrolling through Mrs. F’s chart. She definitely sounded dangerously ill. She had to be hospitalized, probably in the Intensive Care Unit.
Or did she?
The challenge: Difficult choices at the (possible) end of life
The modern hospital is a miraculous place. Today, doctors routinely save people from medical disasters that were unstoppable just 25 years ago. But this magic often comes at a cost. Most people find the hospital to be, at best, uncomfortable and stressful. And being in the hospital always comes with a small risk of complications, such as falls, extra infections, or medication mishaps.
Still, most of the time, the benefits outweigh the burdens and risks. But this balancing of pros and cons gets trickier when a person is terminally ill, like Mrs. F. Even though her cancer was advanced, and she had decided she didn’t want CPR if her heart suddenly stopped, her chart showed that she’d been accepting fairly intensive medical treatments. This was surely helping to keep her alive.
Yet it also sounded like she was starting to get tired of the medical merry-go-round, and was perhaps considering a transition to hospice. I decided to suggest that she go to the ER for more evaluation. Perhaps she could get a blood transfusion, and then we’d see if she could return to the nursing home at the end of the day.
She agreed. An hour later, the ER doctor called me with an update: “She’s definitely having some bleeding from her bowels or stomach. Her family is here. I’ve told them she has to go to the Intensive Care Unit, and she’s agreed to go.”
I felt troubled. I had full confidence in the ER’s medical assessment. If the hospital team stabilized her and found the cause of her bleeding, she’d probably live longer. Yet she’d said earlier that she didn’t want to be in the hospital. No matter what we did, Mrs. F. probably didn’t have much time left. Yet now she was off to intensive care. Was that the only option we could offer?
The solution: The power of offering alternatives
I took a deep breath. “Well, if she wants to go to the ICU, she should. But I noticed in the chart that she’s considered hospice. We should be sure that she and her family know that there’s an alternative to the ICU. If you tranfuse her in the ER now, she’ll probably feel better than she does now. Then we can take her back to the nursing home tonight, where she can be more comfortable.”
“But what if she keeps bleeding? What if she gets worse? She could die,” protested the ER doctor.
“That’s true,” I agreed. “If what’s most important to her is not dying, she should go to the ICU. But if what’s most important to her is to not be in the hospital, we can probably keep her comfortable and peaceful in the nursing home, even if she’s bleeding.”
There was a pause on the other end. “You’d better explain this option to her family,” said the ER doctor. A moment later, Mrs. F’s daughter was on the line. “This decision isn’t mine to make,” she said after listening to me. She sounded scared. “Let me put my mother on the phone.”
A few moments later, it was the daughter, not Mrs. F, on the line with me again. Now she sounded tearful. “She said she wants to go back to the nursing home.” I tried to confirm that Mrs. F. had understood what that might mean, but the daughter cut me off. “I don’t think she wants to have a long discussion about this. She says she wants to go back.”
Mrs. F. was tranfused two units of red blood cells in the ER for her comfort and stability, and went back to the nursing home later that evening.
The nurses didn’t call me about her that night, nor the following day, which was Sunday.
Mrs. F. died on Monday, in the nursing home. By then her usual primary care doctor was back covering her care. He told me that Mrs. F. had been weak and tired but otherwise comfortable. “I’m glad you recommended hospice-style care in the nursing home to her,” he said.
“I didn’t recommend anything,” I said. “All I did was let her know of an alternative.”
My take-home points for family caregivers: Doctors are trained to save lives, and for most people, this is a wonderful thing. But for some people, staying alive as long as possible is no longer the highest priority. If this is the case for your loved one, consider asking doctors to discuss alternatives. Often it’s possible to come up with another plan of care that may be a better fit for a sick person’s needs.
Even those people who have not signed up for hospice will sometimes prefer less medically-intensive care. If available, a consultation with a geriatrician or palliative care team can help identify alternative options.
Have you had difficulty figuring out how to honor an older person’s healthcare wishes? Have you struggled with planning for end-of-life situations? I’d love to hear from you in the comments section!
Linda Levine says
I will be 79 in the spring. I have a number of health issues, more than most of my friends, and have pain most of the time. and to be bluntly honest I would be happy to leave this life. We have assisted death here and hope when the time comes I can get it. but the laws are strict. One of my sons is a veterinarian and he agrees we are kinder to aging animals than we are to aging humans. When we see our animal ill and will never be able to recover we do not force it to live on, we simply lovingly euthanize it and allow it to die in the kindest, dignified. and helpful way possible. We elderly are forced to live on way too long these days. We should be equally kind and respectful to our elderly aging It isn’t humane to force a person to live on in pain, unhappy, and against their wishes. It’s just plain cruel.
Patricia A Moskos says
Thank you for the good article. My husband Jerry faced these decisions a few months ago and passed away at home under Hospice Care in January 2019. I had to go to the hospital before 7:00 AM on my day off work to confront Jerry’s PCP about how his treatment was not progressing. We asked about Palliative care, it was offered; and within a day or two, we had Hospice Care. We were offered Hospice in home or Hospice in nursing home, nothing else was offered. Jerry was coherent and able to hold a conversation when he signed for Hospice Services; and he was competent to sign his DNR. As soon as Hospice was in place in the hospital, Jerry started getting the drugs. He had pulmonary hypertension, breathing was the main issue; not pain. We did not want a nursing home placement. Hospice did not offered us the choice between narcotic and non-narcotic medicines.
I was not pleased with the Hospice services we received because I am of the opinion that he had too many narcotics (Ativan and Morphine). By the time Jerry came home in the ambulance, dressed in a hospital gown, he was incoherent and sometimes delusional. As soon as he was dropped off at our home, Jerry was unsafe, sliding to the floor and doing things that caused concern that he would fall. He did things like attempting to urinate in a waste basket, and taking off the oxygen mask. Jerry was floppy and unsteady, unsafe to walk unassisted, and incoherent, often asking where he was, and insisting that I was his mother. I was forced to hire caregivers in my home which insurance did not cover, costing $24/hour for two weeks duration. Every problem we had was countered by Hospice ordering higher doses of narcotics. I lost privacy in my own home! The stress was difficult to bear. At times, I wanted to run away! But I stuck it out. I am still working to let go of my resentments and anger.
I would like to see some systemic changes in dealing with insurance funded care at the end of life. I am a licensed master level social worker and I am intending to write a professional article on alternatives in end of life care. I believe that Jerry’s end of life experience could have been a great deal better. And, I would like to get political support for making insurance companies pay for the caregivers, which were very much needed, very costly, and the care was provided for us by folks who made very little money. We had a caregivers who fell asleep watching Jerry due to her needing to work several jobs. Thanks for listening.
Leslie Kernisan, MD MPH says
Sorry for the delayed response; we had a glitch in the system and many comments were not brought to our attention for moderation as they should have been. Thank you for sharing your story. I think hospice is overall a very good service, but it’s true that they don’t always use medications optimally. I have more on how to bring up concerns with hospice here: Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned
I completely agree that systemic change is needed! Take care and best wishes in processing this experience and in moving forward.
Don says
Dr. Kernisan,
The following two sentences you gave in your response above were perfect!
Just what I had wished I could have articulated in my comment.
Here are your two sentences … The thing is, in real life it is often messy to truly consult with very ill older adults.
….people’s wishes can be hard to sort out, in part because people often want many things at the same time.
Mrs. F. (and her family) are very fortunate you were on call that morning, to provide alternatives.
Don
Leslie Kernisan, MD MPH says
You are too kind! In truth my style of practice is quite ordinary among geriatricians and palliative care docs…
The good news is that many people are working on bringing more palliative care resources to the ED environment, and we are also seeing more ERs with special sections for older adults.
So hopefully, soon more older people like Mrs. F will be offered alternatives, even if there is no board-certified geriatrician or palliative care provider present.
Don says
Dr. Kernisan,
This was an informative post. Many people I’ve talked to don’t like to think about their end of life and have taken no steps to assure that their wishes are complied with when they are no longer capable. This story goes one step further, in that the patient was apparently not consulted, or at least her wishes were not acknowledged.
Thanks for providing such a clear example of why seniors need to think about, and take action, providing for their own end-of-life. And as a care-giver, make sure they advocate for the wishes of the loved ones in their care.
Don
Leslie Kernisan, MD MPH says
Glad you enjoyed the post and thanks for commenting, as I appreciate the opportunity to understand what others might read into this story.
Interesting that you feel she wasn’t consulted. I would’ve said that in this case, she was consulted; she was awake and involved in the decisions. She had recently decided to be DNR, and had been involved in considering hospice. And she was participating in the discussion of whether to go to the ER, and then whether to stay in the hospital.
The thing is, in real life it is often messy to truly consult with very ill older adults. Even if they aren’t confused or unconscious, they are feeling sick and this patient was probably struggling to figure out just what to do with her care, and her life, and her family’s concerns for her.
Also, I think this story shows how people’s wishes can be hard to sort out, in part because people often want many things at the same time — to be better and to not stay in the hospital — plus it’s hard to know what to wish for when all the options come with serious downsides.
Even with the best preparation, a certain amount of figuring things out on the fly is necessary. Having conversations with family and doctors ahead of time helps. Having asked what kinds of health crises to anticipate helps. Picking up on signals, like when someone says “I’m sick of the hospital” helps. And proposing alternatives to see how people respond helps.
But it’s never easy, that is for sure.