A recent study in the New England Journal of Medicine http://www.ncbi.nlm.nih.gov/pubmed/24088092 found that 40% of 821 ICU patients with respiratory failure or shock had cognitive impairment 3 months after discharge and 24% had scores at 12 months that were similar to those with mild Alzheimer’s disease. A longer duration of delirium in the ICU was associated with worse cognition after discharge but the use of sedation/analgesia was not. Deficits were found in both younger and older patients.
This adds to a growing, although heterogeneous, body of evidence http://www.medscape.com/viewarticle/772342_2 about the long-term consequences of serious or extended critical illness:
- Prolonged ventilation after acute illness- At 1 year, only 9% had a good outcome (alive with no functional dependency), 26% had a fair outcome (alive with moderate dependency), and 65% had a poor outcome (either alive with complete functional dependency [21%] or dead [44%]). Patients with poor outcomes were older, had more co-morbid conditions, and were more frequently discharged to a post-acute care facility than patients with either fair or good outcomes http://www.ncbi.nlm.nih.gov/pubmed/?term=20679561
- Pneumonia/sepsis- Significant and lasting adverse consequences in terms of frailty with 40% 1 year mortality and 70% 5-year mortality http://www.biomedcentral.com/1472-6963/12/432
- Elderly (65+)- 33% die within 6 months. Among survivors at 6 months, health-related quality of life significantly worsened in oldest patients http://www.ncbi.nlm.nih.gov/pubmed/21263318
- PTSD and depressive symptoms, 16% and 31%, at 3 months post- ICU and 15% and 17%, respectively, at 12 months http://www.ncbi.nlm.nih.gov/pubmed/?term=23369507
- Family effects-Up to 40% of ICU patient families 1 year after death meet criteria for psychiatric illnesses such as generalized anxiety, major depressive disorders, or complicated grief. http://www.ncbi.nlm.nih.gov/pubmed/22914431
These are often the patients palliative care teams are called to see. However, my sense is that their loved ones lack this outcome data when making difficult treatment decisions. Instead, families seem to consent to very aggressive ICU interventions in the hope that their loved ones will survive to resume their pre-hospital baseline. We now know that this is unlikely for many of these patients. Would families make different decisions if they knew the likelihood of post-hospital mortality, disability, nursing home placement, etc.? How many, a few months or a year afterwards, regret the aggressive care they agreed to?
Critical and palliative care providers need to recognize that a prolonged ICU stay is only the first step in what may be a difficult, disappointing, and probably shorter than expected, journey. Families need all the long-term facts before they consent to things like trachs, feeding tubes, dialysis, etc. Otherwise, their consent is not truly informed.
This one was different.
“I want to see you every day, till I’m better”, she had told me.
That’s unusual for a hospice patient. She had a deep faith, but really wanted her life to count for something. So far, she hadn’t experienced the significance she expected, though she had five children and a great network of friends. She wanted to be healed, and be a powerful witness for others. It was hard for her to see the value in her dying at 48. She tested me to see if I really believed she could be healed, and if I would pray that way. One day, I prayed what I thought was a positive prayer.
”Pray again”, she said curtly, eyes still closed.
So, I did. This time I was more specific in my prayer for healing. She seemed satisfied. She may be aware of it now, but she did have an impact… on me at least.
From her: I heard our best efforts are not enough faith to overcome death. Only God is that strong.
An article in a recent JAMA Internal Medicine Journal http://bit.ly/16sptD0 reports on the frequency and cost of futile treatment at one academic medical center. Over 3 months in 5 ICUs, the research team found 6.7% of patient days involved futile care. The cost was estimated at $2.6 million.
Futility is something I’m unfortunately familiar with. As a palliative care nurse practitioner in a large urban academic medical center, these are often the cases my team is consulted on. Here are my observations:
- Futility is in the eye of the beholder- The study defines futility as “sustaining life under circumstances that will not achieve an outcome that patients can meaningfully appreciate”. This definition can be problematic as none of us can really determine what someone could “meaningfully appreciate”. Although most, but not all, critical care clinicians know futility when they see it, that is not the case for patients or families.
- Language matters- My experience is that the term “futility” is off-putting to families. If your loved one is critically ill and you want them to survive, nothing the medical team could do would ever be “futile”. And, when we use this term with families, there is a good chance they will be suspicious that our priority is money, rather than their loved one.
- Positioning- Framing futility as treatment that won’t achieve the patient or family’s goals is potentially better. It’s important in these situations to determine what families are hoping for. If it’s recovery to the pre-hospital baseline or full functionality, then evidence, including some from this study, suggests that is unlikely. However, even that is hard for families to accept.
- It takes time- As with all difficult ICU situations, it’s important to view interaction with families as a process. Which is another argument for starting that process early. When we wait until ICU day 20 to meet with the family, the ICU team is already 3 weeks ahead of them in concluding things are becoming futile. Families need time to catch up and support to do so.
I am the director of a Family Medicine residency, one who also does Palliative Medicine, as part of my faculty duties, who often has residents or medical students rotating with me.
Most of these residents and medical students are young, some very young, have little understanding of life, let alone the end of life; don’t know what I, at 62, experience daily as the macular degeneration of life itself, the tunnel vision of diminishing opportunities, the starburst of life lit beyond light, of life about to be obliterated; of what patients themselves, faced with life-threatening illnesses, experience as the stick in the spokes of the bicycle of life.
All the more reason for yet more education.
Many states, including Iowa, where I myself practice, now impose End-of-Life CME on physicians. And we here at the residency have been in the vanguard in this respect, in terms of providing that education.
Still, even as Baby Boomers continue to enter the age of such decisions, those Boomers get to meet my residents, some of whom, at 25, at 26, cannot imagine life at Boomer ages, let alone life for even older patients, many of them facing illnesses, chronic to some, imminently fatal to others.
“I am dying, I’m dying of cancer,” a patient tells me, and I, at 62, take that to heart, thinking that there but for grace, that there, in fact, both my parents went, went themselves all too young.
A resident these days is less likely tempered by life, let alone by death; more likely to be at some remove when illness, when death, imminent or not, interrupts life.
How to teach?
How to make the heart know what it so learns best by breaking?
I have no easy answer, even as I, as a residency Program Director, must find that answer, the better to meet new rules that will dictate that residents be able to independently address end-of-life issues.
I can only say so much when residents are with me, don’t always know what to say.
After all, we, in Hospice and Palliative Medicine, are, in effect, guides, each of us Charon, oar in hand, plying the Styx, always transporting souls, never the dead; souls loved, mostly; souls sometimes lost; souls often begging the tide of hope, the rare one kneeing redemption, all of them, their eyes, that catch in the voice, asking only for eyes to meet their eyes, a hand to touch theirs, arms to surround them, this touch, this, at the end, that abiding, that human touch.
In such moments, my mother, dying in her 40s of breast cancer, is the ghost in the room, and sometimes my father, diagnosed with pancreatic cancer, dead four months later. Their fate, my experience, my education.
But, again, how to teach that?
Can that, that urge, that compulsion to recognize the need for touch, even be taught? Can any number of standardized patients in medical school prepare any medical student to, in the end, care, take the place of the wounded heart?
On vacation recently I read Barbara Kingsolver’s latest novel, “Flight Behavior”. It’s about a poor family, butterflies, and consequences of climate change. (Available at http://amzn.to/136LTH9)
A few phrases stood out for me as they relate to working with palliative care patients and families:
- “I think people are scared to face up to a bad outcome. That’s just human. Like not going to the doctor when you’ve found a lump. If fight or flight is the choice, it’s way easier to fly”.
- When facing disaster: “you do everything you can. And then, I guess, everything you can’t. You keep doing so your heart won’t stop”.
- A realization about the struggles in life: “there is no life raft; you’re just freaking swimming all the time”.
Many of my patients and families are fleeing and doing everything so their hearts won’t stop. While I always try to be compassionate, these phrases reminded me again of how hard it is and that we’re all “freaking swimming all the time”.
Recently I hosted a spring conference for chaplains, and the overall topic was palliative care. A local pulmonologist did an excellent job with his presentation, “Palliative Care and Lung Disease”. He did something I did not expect. He tailored it specifically to chaplains, and emphazed repeatedly how influencial chaplains can be in convincing patients to stop smoking. He spends much of his clinic time educating patients about the benefits immediately of stopping smoking, but estimated only about 10 % to 15% really pay attention. Yet, he estimated chaplains would be heard by nearly all, and taken seriously. Our next task is to determine if that’s a role we should take. I believe we should.