GlassHospital

Demystifying Medicine One Month at a Time

Tag: hospice (page 1 of 2)

End of Life Rallies

Let’s say your loved one is at the end of life. She’s 84, with advanced cancer that is no longer treatable.

A decision has been made to put her in hospice–which is a level of care more than an actual location. [Most hospice actually occurs at home.]

The patient waxes in and out of consciousness, sometimes lucid, but mostly not.

While no one is ready for her to die, this end-of-life process brings some solace–it’s what your loved one has indicated she wants, and the time at home without aggressive, often fruitless, medical treatment, allows other friends and family members to make visits and share stories.

One afternoon, she perks up and asks for a sandwich. This is surprising, because she’s barely eaten anything in the last ten days. But we get her that sandwich!

She nibbles at it, happy, but doesn’t eat much of it.

That afternoon, she’s talkative and engaged with others in a way that she hasn’t heretofore seemed able to muster.

Is she making a comeback? Healing from her illness?

More likely, this is what is called “rallying,” and while there’s ample anecdote of its occurrence in situations like this, we have very little understanding of it.

How does it happen? As a recent NYTimes article stated:

Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.

It’s deceiving because we think our loved one is getting better. And while she’s more like her old self, unfortunately, it’s not bound to last. Which is why it can be upsetting for some.

Spiritually, some suggest that the dying loved one is simply readying for transition–making sure that earthly concerns will be attended to in her absence and that final goodbyes may be uttered.

I’ve seen it–and especially in elders afflicted with dementia, it can be heartening to see them rally and seem to know what’s going on–accepting their impending death, and engaging with their loved ones before drifting off.

A Mississippi Resurrection

Walter “Snowball” Williams was 78. He was terminally ill, though the condition was not specified.

As CNN and other outlets reported, when his expected death occurred, the hospice nurse that had been caring for him called a funeral home to pick up the body, as is customary.Sunset

However, on the embalming table, the body bag that contained him started showing signs of life—kicking and rhythmic breathing. The funeral home director called an ambulance. Paramedics brought Williams to the hospital. Sure enough, he had a pulse. His heart was beating.

Had his heart totally stopped and restarted? Was it a case of pacemaker malfunction, springing back to life? Just a simple miracle? His family and many others certainly think so.

No mention of what happened to Mr. Williams during his subsequent two weeks. My fear is that they were spent entirely in the hospital. One source indicated that he was able to return home.

That’s where the longtime farmer died, two weeks after he came back to life.

Hospice: Mission Creep

Doctors are asked to sign things all the time: Prescriptions, home nursing care plans, death certificates, diabetic shoe forms.

Less frequently, hospice verifications.health_care_spending

Why was I asked to sign hospice orders for Mr. Taylor? Sure, he was old. Eighty-seven.

He’d survived decades of high blood pressure, two major surgeries, unintentional weight loss, chronic pain, headaches, even a benign brain tumor. But I had never referred him to hospice.

I wouldn’t have diagnosed him as “terminal,” i.e. expected to live six months or less. As far as I could tell, he’d just keep on truckin’ for another year or three.

So why was I being asked to sign hospice paperwork for him? How did this come about?

“Mr. Taylor, why are you in hospice? Are you dying?”

-Not that he knew of. He’d just been told that he’d get more ‘home services’ that way.

“Who set this up for you?”

-It was one of those “home doctors.” Geriatric care providers that offer house calls to infirm seniors when it’s too hard for them to come to a doctor’s office.

Thing is, he was still plenty able to come to my office. And did so regularly.

Apparently, though, the opportunity to get more home services was too good to pass up.

The agency that was providing him at-home medical services referred him to a for-profit hospice firm–one that could collect the daily Medicare fee for a hospice enrollee.

Is it any wonder, then, that we’ve seen a surge in hospice enrollments in the last few years?

Finally, someone has written something about it. Thank you, Washington Post.

Money and a Model

cartoon-doctor-16Two great stories in the NYTimes deserve comment here:

1. “Health Care and Pursuit of Profit Make a Poor Mix” appeared on the business page. It could have appeared in the paper’s health coverage. Or on its front or editorial pages.

Examples abound: For-profit nursing homes used sedatives on elders at four times the rate of non-profit homes. It’s much less expensive to sedate people than it is to give “…special attention to more active patients who need to be kept busy.”

The article raises “…a broader, more important question: How much should we rely on the private sector to satisfy broad social needs?”

2. “As Nurse Lay Dying, Offering Herself as Instruction in Caring” appeared on the front page on January 10th. The story is about a nurse named Martha Keochareon, who at age 59, with terminal pancreatic cancer, enrolled in hospice. She called her alma mater, Holyoke Community College, and offered herself up as a “teaching” case to current nursing students. These soon-to-be nurses crossed the phobia boundary and provided first hand care to a dying person. Ms. Keochareon received the benefit of passing on her wisdom and gaining companionship in her final days.

It’s a moving story to see someone so frail offer so much. She died December 29th.

Taken together, the two stories address fundamental questions we are all asking (whether consciously or not) about what kind of health care system we want and how we want to be treated when we’re suffering or dying.

I’d love to hear your thoughts here.

One Example of End-of-Life Care in America

She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.

She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.

Being there.

Being there.

Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.

My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.

The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.

The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”

Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.

“Bearing witness is our most important role,” a mentor once taught me.

I came in to round with Elaine. We went immediately to the patient’s room. The son and one of his sisters were there supporting their mother.

In the bed I saw a pale, thin, older woman who appeared to be lying comfortably. I asked her if she was in pain. “Would you like some tea?” she asked.

I told her she didn’t look ninety-four. She smiled. I told her she had a beautiful smile, and she smiled again.

We proceeded to discuss the medical issues with the patient’s son and daughter:

  • Advanced dementia
  • Weight loss
  • Multiple falls
  • Hip fracture
  • Anemia
  • Irregular, potentially unstable heart rhythm

“What would your mother want?” I asked them. “If she could decide for herself, what would her goals be?” Given her frailty, even with repairing the hip she’d never walk again.

Understandably, the concerns were about her suffering and feeling pain. At the moment, we were all in agreement that she looked comfortable. I broached the subject of not doing anything to treat the arrhythmia or the broken hip. Of not putting the patient through surgery.

The son was clear. “She wouldn’t want surgery,” he told us. His sister agreed. Consensus! We would refer her to hospice. She’d live out her days in comfort, forgoing the indignities of further medicalization.

At that moment, the orthopedic nurse practitioner walked into the room, carrying a consent form. She approached the opposite side of the bed. Before she could launch into her speech, I cut her off. “The family has decided on hospice,” I informed her. I asked to speak with her outside.

“We’ve only not operated on two occasions that I can remember,” the nurse practitioner told me. Her comment unnerved me. Clearly we were deviating from standard operating procedure here. “If a hip’s broken, we fix it,” is what she was telling me.

She documented our conversation and the fact that the family had declined surgery in the chart.

I went back in the room. I asked the family if they had any more questions. Satisfied that we’d answered everything to the best of our abilities, I excused myself and Elaine. We thanked the son and daughter for their courage, and affirmed that I thought they were making the right decision to forgo surgery.

Outside the room, we debriefed about the encounter. I was very proud of Elaine’s poise in a difficult patient/family situation, and how well she reasoned through the multiple options. I told her that I admired her instinct to mitigate harm to the patient by not over-medicalizing the situation, as many would have done since it’s almost always the path of least resistance in the hospital.

Alas, we congratulated ourselves too soon.

NEXT POST: POOR COMMUNICATION

Older posts

© 2018 GlassHospital

Theme by Anders NorenUp ↑