She is nearing a century, and now, these last months, in and out of the hospital, weak, not springing back, me seeing her now for that, that weakness, this latest admission.
She’s weak, to be sure, one discharge prelude to another admission. But better this morning, no new issues, as together we meander the consult.
“Is there a church or faith community important to you?” I get around to asking her.
The answer is at once quick, “No,” only to be tempered. “But I have talked with God,” she tells me. “I saw heaven. Saw what a beautiful place it was.”
This, after her stroke, she’s not sure how many years before, after recovery, she remembering that loss of light, that light then, remembering dying.
She had looked down on her husband then, she told me, saw him weeping, did not want him to longer cry, could not bear those tears, resolved then to come back.
Alive again, she prayed, she told me, asked God this, heard that, God telling her that her troubles would no longer be troubles.
And they weren’t.
“God took them all away.”
After all,” she went on to say, “God never sleeps. He has always come to me.”
In that time between dying and again living, she had also seen a friend of 40 years, one recently dead, that friend in that reverie dressed entirely in yellow, her big hat included.
Until then, over those 40 years, she had never seen her friend in yellow, only to have her friend’s children tell her afterwards, “Yes, yellow was always Mom’s favorite color.”
“I never knew,” my patient told me. “Never knew.”
For her, that friend, that color.
For me, my mother, the day before her death, apologizing for dying.
Or me, kissing my father one last time, he dying of pancreatic cancer, and I’m leaving then for the airport.
“I love you,” I said, those words sealing a kiss.
“I love you, too,” in a breath, my father returning my words, my father ever detached from feelings, head under a cap, his eyes never then meeting mine.
“Now, get out of here,” he tells me, not meaning a word.
These years later, that patient, that dead friend, her friend, entirely in yellow.
If love has a color, it must, I now think, be yellow.
More often, though, love hides its colors, lets its meaning linger long in words like those, as those of us who do this, know.
Words like, “I love you, too. Now, get out of here.”
A recent study published in JAMA explored the frequency of decision making by family members or other surrogates in the hospital http://www.ncbi.nlm.nih.gov/pubmed/24445375 . Most of us are familiar with the involvement of surrogates in the ICU as many patients there are unable to participate in their own decision making. Indeed, almost 70% of ICU patients in this study requiring surrogate involvement. However, the new finding was that surrogates were also involved for over 40% of older adults on hospital wards.
Those patients who had surrogate involvement tended to be older, have altered mental status, be from a nursing home and/or on Medicaid, and were more seriously ill than those who didn’t need surrogate assistance. Not surprisingly, only 7.4% of patients had a living will and only 25% had a documented healthcare power of attorney or agent so the surrogates were vital to determining the patient’s goals.
The authors concluded that clinicians caring for hospitalized older adults should assume that surrogate decision makers will be involved nearly half the time when major medical decisions need to be made. The current practice of rounding without these surrogates or focusing conversations on just the patient overlooks the fact that many patients are unable to provide adequate historical information or make independent decisions. As a result, we need to adjust our communication to acknowledge the importance of family or other surrogates. We need to stop thinking of family as “visitors” and start including them as active participants. This adds complexity to the process but, with the aging population, is the only way to insure true patient-centered care.
Present with the patient were several family members, one of whom asked insightful and technical questions about home and hospice care. After a few minutes, I asked her if she worked in healthcare since she seemed to know so much. She pointed to the iPad in her lap and said, “No, but I have an iPad”.
No, but I have an iPad. We all know technology has become a big part of our lives. As access to the internet increases through the proliferation of devices like smart phones and tablets, more people go online looking for health information. This is particularly the case for those with a recent medical crisis, 65% of whom seek health information online versus the 55% of those not experiencing a crisis (http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx). However, beyond education about an illness, there is some evidence that people go online because they don’t get the information they need from their healthcare providers. One survey found that people were more likely to go online for information if they felt that their communication with providers was less patient-centered http://www.ncbi.nlm.nih.gov/pubmed/?term=21154093
That leaves those of us who do actually work in healthcare with several opportunities:
- Identify information needs- Clinicians need to determine how much and what patients with serious illness want and need to know. Although people go online for information, they prefer to get it from their healthcare providers.
- Suggest online resources- To supplement the information we provide in person, we need to suggest good online resources for patients and families interested in getting even more information. There are wonderful medical sites available, so you should know the key ones for your area of practice.
- Encourage prepared patients- We need to be open to the fact that some patients and families will come in fully informed and we need to support that. My acknowledgement of this family member’s expertise supported her efforts to help. And, as a result of those efforts, the patient and family knew enough about hospice that we could discuss the specifics of their situation.
So, as we all become more and more dependent on technology, we need to modify our clinical practice accordingly. However, good care will always involve personal interaction. We can’t just leave patients and families to their own devices.
My older brother once said I could speak the entire English language by the time I was 3-years old. That seemed at the time like a compliment. Now, I’m not so sure. I have come to regard my ability to talk as a liability, and hope to make it less so as time goes by.
I am learning from people every day, by listening. I cannot learn by talking. I have to pay attention enough to see their struggles, their strength, and their faith. They continue to shine in the midst of their worst challenges and fears. They fight with their bodies and their spirits, and they teach me every time.
On any given day in a hospital there are a hundred stories waiting to be told. Yet, too few of us are able and willing to hear them. The same is true in every nursing home, assisted living facility, house, and apartment. The desire to be heard is deep within all of us.
Regardless of age, we all wish to tell of our challenges, troubles, and victories. Those who can listen have a unique power to offer support, encouragement, and a deeper understanding of life. Listening does several things. It establishes trust. It honors the speaker. It provides space for things to be said that might otherwise not get said. It provides witness to the lives of people they seem to need. It is also rare, which makes it valuable in itself. What we hear when we listen will surprise us, teach us, and amaze us. Often too, it will inspire us. I have been richly blessed by listening to people from all
As a palliative care nurse practitioner in a large academic medical center, I’m dismayed when some of my frailest patients get discharged to “rehab”. It seems unlikely they will be able to effectively participate there, so what happens is those who can’t end up becoming long-term care or nursing home patients through the rehab back door.
I can understand patients and families wanting to pursue rehab. It sounds so promising: a chance to gain enough strength to resume their previous lives. But, as I’ve blogged before (http://palliativejournal.stanford.edu/?p=45109), that hope is unrealistic for many. And the transition to long-term care/nursing home status can be abrupt. Rehab facilities are required to make a regular determinations of a patient’s performance and so, from one day to the next, patients can “fail” rehab. Reviewing the literature, it looks like 20-30% of rehabilitation patients do so and become long-term care residents. (This is actually a very difficult area to search because there are so many different post-acute options and the patient population is heterogeneous.) In my experience most would refuse to be discharged from the hospital to a nursing home but go willingly to rehab.
Part of the problem, again, is that we don’t talk about this possibility in the hospital or when we send patients to rehab. Instead, that falls on our colleagues working in long-term care. I recently met with a wonderfully progressive team at the Genesis Spa Creek facility outside of Annapolis, Maryland http://www.genesishcc.com/SpaCreek . They shared the difficulty they have as the ones who finally have to break the bad news to patients and families that they are not able to go home and that a nursing facility is their only option. Many patients had begged their families never to send them to a nursing home, yet that is where they are.
So, my apologies to my long-term care colleagues and to the patients and families who sign onto rehab but end up in nursing homes. Post-acute care is a hot topic in healthcare reform and hopefully someone will come up with better options and transitions for us all.
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?