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Guessing at someone’s quality of life


I saw a patient recently who has had several strokes, been in a wheelchair for the last few years, and is now living in a nursing home. He was in the hospital for a wound infection that had become chronic and resistant to antibiotics. His team asked me to talk to him about goals of care. When I asked him what he would do if he didn’t get better, he wanted to know if I meant that he would become an invalid. Surprised at his question, since that’s how most would have already described him, I asked him what being an invalid meant to him. He said that would be if he could no longer move around on his own in his electric wheelchair.

This conversation reminded me yet again that people are amazingly adaptable and many accommodate to significant disability and can still be content. This is contrary to what clinicians often think when they talk about a patient not having a good quality of life. They usually mean that the person has lost some function, is chronically ill, at the end stage of a serious illness, etc. Yet, as with my patient in the wheelchair, it isn’t possible to determine someone’s quality of life from the outside. Only the person can say what that is and whether life is worth living. My patient misses going outside to smoke. That doesn’t sound like much to many of us, but to him it’s his whole world.

A Different Kind of Palliative Emergency

Each year I attend a lecture for our palliative medicine fellows called, “Palliative Emergencies.” The emergencies discussed usually include: impending compression fracture, hypercalcemia in the context of malignant disease, and superior vena cava syndrome.  Also each year, the presenter considerately asks, “Those of you here from other disciplines than medicine, what are some situations in palliative care that you consider ‘emergencies?’” After 12 years of me attending this talk every October, the speaker has come to anticipate that my hand will be the first to go up. 

So what’s first on my list of “palliative emergencies” from a social work perspective? Advance care planning.  There are certain situations where having the, “What would you want done if…” conversation and documenting a patient’s wishes is urgent.  Here’s one example, a patient has capacity to make decisions but death is likely in the next few weeks.  She is not married to her partner of 20 years, and her partner and the patient’s estranged sister do not get along.  By state law, without an advance directive in place to indicate someone else as the surrogate decision maker, the sister will be the surrogate if and when the patient can no longer has capacity. 

Another example, a patient and his wife have very different opinions about whether further admissions to the intensive care unit would benefit him and his heart failure.  He feels done with hospitalizations and would like to die “naturally” at home.  She, however, believes he should receive attempts at resuscitation and further ICU stays, “just in case he recovers one more time.”  He’s not completed an advance directive nor spoken to his primary care provider about completing a physician’s order for life-sustaining treatment (POLST).  Without having his wishes documented, he is at greater risk of receiving treatment he does not want, and not having the sort of death he prefers.

Advance care planning does not need to be done only in emergent situations or as death approaches.  The 7th Annual Health Care Decisions Day (April 16) provides an excellent opportunity to bring to the attention of those you work with and care for the benefits of thinking about, talking over, and documenting health care and surrogacy preferences.  Many resources for Health Care Decisions Day events are available on the web, but the most important thing is to at least begin the conversation before an emergency comes along.

Advanced Practice Nurses stuck in the “Middle”

blogimageI’ve been in a couple of situations recently where people have used the term “mid-level” to describe nurse practitioners (NP’s) or advanced practice nurses (APN’s). They likely didn’t mean to be derogatory, but that’s how it feels to this NP.  Think about it: mid-level implies that APN’s are of a lower stature or quality than physicians, which is not the case. We are different in training and perspective, but the evidence shows our outcomes are comparable and sometimes better (


It would be handy to have a term specifically denoting “non-physician licensed independent healthcare providers” but “mid-level” is not it. So, the next time you want to describe such providers consider that “APN’s” is the same number of syllables and “APNs/PA’s” only a few more and both are more collegial.


And, while I’m on the topic of APNs, the Federal Trade Commission (FTC) just issued a policy paper warning those states considering restrictions of APN practice that such restrictions could be interpreted as potential restraint of trade since they impede competition and restrict access to providers who are effective and safe ( . This is a follow up to the 2011 IOM Future of Nursing report which advocated allowing nurses to practice to the full scope of their education and training .


We will all be needed as providers given our aging population and healthcare reform. Palliative care could lead the way since we are an interdisciplinary specialty that has strongly embraced APN’s. Onward!



I have been receiving announcements regarding seminars on having conversations about end of life care. Several months ago, I led an interactive seminar on asking the questions that start the conversation. The assumption is that everyone wants to have the conversation when we do. Read the rest of this entry »

The Color of Love

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.”

And Family Makes Three: Surrogate Decision Makers in the Hospital


A recent study published in JAMA explored the frequency of decision making by family members or other surrogates in the hospital . 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.

Technically Informed

I recentlykeyboard met with a patient in our cancer center. His oncologist had consulted palliative care to help discuss goals of care and hospice.


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 ( 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


That leaves those of us who do actually work in healthcare with several opportunities:

  1. 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.
  2. 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.
  3. 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.

Be Amazed!

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

The Rehab Back Door


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 (, 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 . 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.

End of Life on TV: Coming to a Cable Station Near You

TV set

If you had told me a year ago that there would be two cable series on aging and the end of life, I would have told you you were crazy. Yet that is the situation as of last month:


First, Showtime has been running a powerful 6-episode docu-drama on dying patients and their families called “Time of Death” ( since early November. They describe the program as “What are the final weeks, days and very moments of life really like? TIME OF DEATH offers an unflinching, intimate look at remarkable people facing their own mortality. Cameras follow these brave, terminally ill individuals as they live out the end of their lives, supported by family, friends, and dedicated healthcare and hospice workers who gently guide the process. This groundbreaking documentary series provides a tangible, hopeful reminder of the finite nature of our time here on earth”. The reviews online have been positive although some note that the program glosses over some of the messier aspects of death and dying.


I have watched 3 episodes, the first of which is available for free on the Showtime website at , and have been very moved. The patients and families spoke so frankly about their illness and death, it was just like seeing my real-life cases. One family allowed the cameras to be in the room as their son was actively dying and a wonderful hospice nurse explains that process to them and to the audience. We come close to witnessing his actual death and in episode 3 a man with ALS dies and they show the family doing post mortem care and having a wake, things I never thought I’d see on TV. This is the work we do everyday and now others outside of our field can see it too. The series will be available until mid-January and so far you have to have a Showtime subscription but I hope it will eventually be available outside of that (Netflix? Hulu?)


The other new show is an HBO comedy called “Getting On”. This started on Nov. 24th and is also 6 episodes, but is a comedy about the staff of an all-female geriatric unit of a California hospital . The review from the New York Times described it as “brash” and “not shy about viewing this universe through an absurdist lens.” ( ). I watched the first episode as well and unfortunately didn’t find it funny. I also didn’t see how it would be of interest to a wider audience, but with HBO that’s not an issue.


These programs contribute to the increase in media coverage about the end of life that is very encouraging. As I noted in a previous post ( ) I think we’re at a tipping point on this topic and hope that these programs help fuel a national conversation about the last part of life. Stay tuned!

Another Drizzly November Drive

While driving home in the drizzle, I thought about the many autumn sites I have seen driving home. In August, I attended the New England Women’s Herbal Conference. Read the rest of this entry »

Informed consent in the ICU: Long-term consequences


A recent study in the New England Journal of Medicine 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 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
  • Pneumonia/sepsis- Significant and lasting adverse consequences in terms of frailty with 40% 1 year mortality and 70% 5-year mortality
  • Elderly (65+)- 33% die within 6 months. Among survivors at 6 months, health-related quality of life significantly worsened in oldest patients
  • PTSD and depressive symptoms, 16% and 31%, at 3 months post- ICU and 15% and 17%, respectively, at 12 months
  • 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.

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.

The Deep Questions

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.


One of my drawings was recently accepted into a juried show. I commented that I had almost stopped thinking about making art. Artist colleagues and friends told me that as long as I was breathing, I would think about making art. Read the rest of this entry »

Please stop “futile” care

An article in a recent JAMA Internal Medicine Journal 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:


  1. 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.
  2. 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.
  3. 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.
  4. 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.
Can We Talk?
Watch and share this five minute video about the need for prophylactic end-of-life conversations. Laura Heldebrand, an ICU nurse tells her mother's story.
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