Showing posts with label suffering. Show all posts
Showing posts with label suffering. Show all posts
Tuesday, November 17, 2015
by Beth Fahlberg, PhD, RN, CHPN
My reflections in the article below are offered to teach and to promote better care. They are not intended as criticism. Instead, this message is offered to carry out my brother’s legacy, telling others about his experiences, so that care for others can be improved. Chris wanted to teach those caring for him to understand him as an individual with very complex and unique needs and a highly developed self-management plan to stay as healthy as possible. For years, he lived on a tightrope of clinical stability that could be thrown off kilter with any little change. I’m thankful for the support and care we received, and for the difference our palliative care team made in his last days.
In the last 6 months, since losing my brother Chris at age 47, I’ve been grieving. My grief has been more prolonged and intense than any other loss, not only because he is no longer with us, but because I continue to relive the terrifying times when he could not breathe. These episodes were particularly intense when he was hospitalized, and especially in the weeks, days and hours before his death.
In the hospital, he couldn’t just take an inhaler, a nebulizer, and an anti-anxiety med, like he would do at home. I wasn’t allowed to turn up his oxygen, or to give him his morphine, like I would do if we were at home. Instead, our well-honed symptom management plan was disrupted as soon as he was admitted. And ironically, this is where he needed his symptom management plan the most, when his heart and lung problems were at their worst.
- Yet I was scolded for turning up his oxygen, even though I’m a nurse, and had been doing this for him at home for years.
- When he requested a nebulizer, it often took 20-30 minutes. The nurse had to page respiratory therapy (RT) to administer it-nurses were not allowed to administer nebulizers on that pulmonary intermediate care floor.
- I had to advocate for him with numerous staff so he could even keep an albuterol inhaler at his bedside.
The impact of symptom distress
How many times did he call me from the hospital during those two weeks, telling me “they’re not listening to me!”, his ongoing anxiety triggered by anything that was out of his normal routine for coping with his symptoms. How many times over the years of many hospitalizations did I get out of bed, and drive to the hospital late at night because he was distressed that they were doing things to him that he didn’t understand, or that he believed would exacerbate his symptoms?
- These episodes caused tremendous anxiety and distress for both him and for me throughout his last years, and especially during his final days and hours.
- These experiences had a detrimental impact on our satisfaction with his care.
- These memories continue to trigger my grief.
The importance of patient and family control over symptoms
Every time he was admitted, Chris felt like control over managing his symptoms was the purview of everyone EXCEPT him. He became dependent on the nurse, the physician, the respiratory therapist, the pharmacist, and many others, as well as “the system”. He was afraid to say anything critical about this because he knew that he was dependent on them for everything. Losing control over symptom management in the hospital is anxiety-producing in normal circumstances and terrifying during a symptom exacerbation, especially when you feel like you can’t breathe. And so I live with regret, having been unable to adequately protect and defend my little brother from the terror of feeling like he was suffocating during his final days and hours.
Rapid time-to-treatment: A new focus for quality symptom management?
In Hospice and Palliative Care, symptom exacerbation or distress should be an emergency. But is it treated as such?
In the midst of my brother’s last hospitalization, frustrated and angry in seeing him suffer time and again, I wondered “Why isn’t symptom distress treated as a true emergency?” I began looking at this issue through the lens of my background in cardiology.
Ischemia is an emergency in cardiovascular care. Time to treatment has been used as a standard for quality care in cardiovascular emergencies, for over 20 years. As a cardiac clinical nurse specialist from 1996-8, I remember collecting data about door-to-drug times at my institution so we could minimize the time between patient presentation with acute myocardial infarction (MI), and treatment with tPa. This time-to-treatment focus continues to be used in to promote quality care in cardiovascular emergencies, now including stroke. This scrutiny of time intervals in the systems of care has been effective in identifying causes of treatment delay. It has provided data to streamline systems so they work quickly and effectively in cardiovascular emergencies.
If symptom distress is a priority in Hospice and Palliative Medicine, could this cardiac quality improvement method be used to streamline symptom treatment? Could symptom symptom distress be viewed as a critical incident, in which time intervals between each step in the system are recorded, from the patient/ family symptom report until the symptom is controlled?
Prioritizing rapid symptom relief
Rapid relief of symptom exacerbation and distress in the dying patient (or anyone with advanced illness, especially during hospitalization) is essential to quality care, yet it is rarely being treated as a priority. If it were, our care approaches and quality indicators would be different.
- We would give the patient and family more control over their symptoms in all settings, facilitating their use of personalized symptom management strategies in all settings.
- We would consistently order individualized multi-component rapid symptom relief plans, based on what they know works for the individual, and carried over from one hospitalization to the next.
- We would not abandon patients and family members in distress. Instead, someone would be present to provide support and non-pharmacologic symptom management strategies while others are getting meds and new orders.
- We would employ interdisciplinary comfort and support-focused rapid-response teams for symptom distress episodes lasting over a few minutes.
- We would do rapid-cycle improvement projects to reduce time from symptom report to relief.
Join in the conversation on the #HPM tweetchat this Wednesday, November 18, 2015 at 9 pm EST, when we discuss the following questions:
Topic 1: What is the immediate impact of poorly controlled symptom distress on the person who is dying and their loved ones, both immediately and long-term?
Topic 2: How do you promote rapid alleviation of symptom exacerbation and distress?
Topic 3: What guidelines and policies are needed to promote rapid time-to-treatment and patient-family control during symptom distress episodes, especially in acute care?
What: #hpm chat on Twitter
When: Wed 11/18/2015 - 9p ET/ 6p PT
Host: Beth Fahlberg, PhD, RN, CHPN @BethFahlberg
Beth Fahlberg is a nurse educator, clinician and researcher with clinical experience in a variety of settings including hospital, clinic and home. She began teaching nursing in Seattle in 1995, and is now developing interprofessional continuing education programs on aging, supportive and palliative care in the Division of Continuing Studies.at the University of Wisconsin-Madison. Her greatest passion in teaching is giving voice to the patient and seeing her students develop as compassionate, skilled clinicians, who embody the pallaitve care philosophies, principles and practices she has taught them. Her personal and professional lives have often overlapped, and she uses her experience to convey what’s important to patients and families in her writing. She writes a bi-monthly column on issues in palliative and end-of-life care in Nursing 2015.
You can access the transcripts and analytics of #hpm chats through @Symplur.
Tuesday, November 17, 2015
Tuesday, September 24, 2013
“What words can be uttered? Your turn just slightly and
there it is: the death of your child. It is part symbol, part devil, and in
your blind spot all along, until, if you are unlucky, it is completely upon
you. Then it is a fierce little country abducting you; it holds you squarely
inside itself like a cellar room – the best boundaries of you are the
boundaries of it.” – Shirley Jackson, from “People Like That Are the Only
People Here,” in Birds of America*
* * *
“Doctor, you might have children just like anybody else.
Would you want somebody to give you false hope or tell you, ‘OK, your child is
gonna be fine,’ and you know she’s not?” - Parent feedback (Meert et al)
* * *
“Barriers to resuscitation status discussions were ranked
according to the percentage of physicians and nurses who identified the issues
as often or always a barrier. The top 3 barriers were unrealistic parent
expectations (39.1%), lack of parent readiness to have the discussions (38.8%),
and differences between clinician and patient/parent understanding of the
prognosis (30.4%).” - Sanderson et al.
* * *
I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection
of short stories Birds of America* as
a college freshman. At that time, nary had a thought entered my mind about a
career in medicine, and I read the book during my coursework to obtain that
ever so useful creative writing degree. The story was used again in a course I
took later in college, and, again after I changed paths and went into medical
school. It just kept showing up, and I kept reading it. The strange thing was,
though, that I would forget I had read it until a few sentences in, when I
would start to think, “Huh, this sounds very familiar…”
I’m sure that the 18 year old version of me who read the
story took something from it far different that any of the other versions of me
who have read it. As it is now, being a mom as well as a physician, I find it
almost impossible to get through because it is too real and too scary. Although
“fiction,” it is a scene that happens every day, in which moms like me, with
kids like mine, and doctors like me, with patients like mine, find themselves
abducted by that “little country.”
So when I sat down to write about Amy Sanderson and
colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I
had read something before that would tie in with this study. It was another
case of “Huh, this sounds familiar…” I knew there was another angle to this, so
I dug through my file folders until I can to the one that said “Parental
Perspectives” and another one labeled “Provider Perspectives.”
Both are very full of articles with frayed edges; and in
these folders, a dichotomy.
In one folder, articles filled with attempts at identifying
the needs of parents by culling through their experiences. Common themes present themselves: losing a
child is incredibly difficult – whether that child was a 17 week fetus or a 17
year old football star; there are no ways to be prepared for the loss of a
child; honest and straightforward information and compassionate communication
from doctors and nurses is helpful and necessary. In short, parents what to
know what is going on, and they want to be able to have the information, even
when there is prognostic uncertainty, so that they can be active participants
in the care of and decision making for their children.
In the other folder, articles filled with identifying how
pediatric care providers handle communication during times of critical and/or
terminal illness. These pieces consistently find similar issues with communication
between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers
that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these
communication skills, a lack of training in these skills, and a concern about
prognostic uncertainty in pediatric patients’ disease processes as key
barriers.
There is another common barrier theme that arises from the
studies of the providers, though. It is one that, in light of what we see from
parent surveys and studies in which parents are almost begging for more
information, may surprise you.
Pediatricians give, as one of the most common reasons for
NOT engaging in goals of care, end of life, or code status conversations a “lack
of parental readiness” or “lack of parental acceptance.” There are worries
about “unrealistic parent expectations,” as well as “clinician concern about taking
away hope.” When I read these reasons, and also think about the combined lack
of education and training, as well as lack of confidence, it makes sense how
these crucial conversations become avoided. If you don’t feel like you know
what you are doing, you are afraid of messing it up, and also afraid of
upsetting or having conflict with parents, then pausing to ask “what are we
doing and why? And is this the right approach or your child?” takes a backseat
to the pressing issues of the vent and the drips and the day to day medical
management. Just because it is an understandable position doesn’t make it
right.
As a parent is
quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all
questions. Give all information—parents can handle it. What we cannot handle is
not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.
What they found is disconcerting. Although about 2/3 of
those surveyed -- physicians as well as nurses-- stated that “a DNR order
indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR
order to be the threshold for the limitation
of treatments not specifically related to resuscitation.” Finally, about 6%
of those surveyed “believed that a DNR order implies that only comfort measures
are to be provided.”
Let that sit for a moment.
I’m sure most of us have had the experience of being called
on a patient and hearing something that begins, “Well, she’s a DNR, but I went
ahead and checked her vitals anyway and she has a fever of 102.” The
implication of that phrasing, or variants of such phrasing, are that since the
patient “is” a DNR (it’s a new species, look it up) that routine evaluation and
management of non-cardiac arrest scenarios is to be discontinued. I cringe when
I hear this call, and cringe more reading the misguided implications of the DNR
order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was
found in Sanderson’s study, perceived to affect care beyond response to
cardiopulmonary arrest.
How does this happen? How does a DNR order become a signal
of “comfort care only?” Or lead to an assumption that it might include “limitation
or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the
discomfort that pediatric providers have with communication near the end of
life, but also their desire to protect their patients from what might be seen
as a futile intervention, a conversation about a DNR order might be a proxy for
a “bigger” conversation. It becomes a sort of substituted goals of care
conversation, in which decisions are made and judgments potentially assumed,
but in which that critical element of mutual understanding between all parties involved
remains lacking.
There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but
it is slow to gain steam in training curriculum already tightly packed to fit
into three years. And this does little to address the needs of practicing
pediatric providers, doubly frightening since they are the ones training the
future providers. It is a need that, no matter how far we advance in the world
of medicine, is going to remain. Sad as it is, difficult as it is, unfair and
tragic as it is: children are going to die. These children and their families
deserve care providers who can as deftly handle end of life care as they do
handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something
medically horrible befalling one of my children is almost too much to bear. The
idea that I might be left in the dark about his condition or prognosis and not
have the information I need to make the best decisions for my child and our
family is another layer of suffering I don’t think I could tolerate. When the
unthinkable happens and a parent is kidnapped into that “cellar room” that
Lorrie Moore described, she needs to
hear voices from the outside telling her what is going on throughout her time
in the cellar, not just when it is about to be flooded or set ablaze. And
though no one can truly get into that cellar room with her, they can open
windows into it, hold a hand through it and promise not to let go.
For those providers who don’t feel they can do it, there are
providers out there who can and will. There are those of us passionate about
pediatric palliative care here to guide and support our professional colleagues
just as much as we are here for the patients and the families. We know that sometimes the providers feel
like they are in their own cellar room, and we care about our professional
colleagues as well as patients and families. We can’t help you if you don’t let
us, though, and even though it can be hard to ask for help, consider the
alternative. Consider the patient and her family. Consider that perhaps after
having a palliative care provider there with you a couple of times, you will be
able to feel confident and comfortable enough to handle the next one on your
own. And then maybe teach others how to do the same…just like an invasive
procedure in which you “see one, do one, teach one,” the end of life or
advanced care planning or code status conversation(s) are skills that need to
be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from
their palliative care colleagues, though. For those of you adult palliative
care providers out there, don’t think you can weasel your way out of this: you
are needed as well, and yes, you CAN handle working with young patients. Just as pediatricians shouldn’t opt out and
say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to
say, “But I’m an adult palliative
care provider, I don’t do kids.” We’ve
all got to pitch in here.
Really and truly, you can do it. And if you run into a
question or a problem along the way, guess what, the pediatric palliative care
community is pretty small, and we are generally very nice, and we LOVE to help our colleagues. You can
email us (I’m pallcareriegel@gmail.com
or eriegel@kumc.edu) or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC. I’m missing other routes and organizations
here, so if any one reading this wants to add to the comments, please do. Basically,
we want to shout “Help us help you!” 
Sanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224
Other cited works:
Beach,
M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50,
2057-2061. (Open Access PDF)
Longden,
J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3),
131-139.
Meert,
K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1),
2-7. (Open Access PDF)
Meyer,
E. C. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics,
117(3), 649-657. (Open Access PDF)
Durall,
A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditions. Pediatrics, 129(4), e975-e982 (Open Access PDF)
Photo credits:
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal
Child: Emily Riegel
*Links are Amazon Affiliate Links. Any proceeds from sales using these links support Pallimed outreach efforts.
Photo credits:
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal
Child: Emily Riegel
*Links are Amazon Affiliate Links. Any proceeds from sales using these links support Pallimed outreach efforts.
Tuesday, September 24, 2013
Wednesday, June 26, 2013
Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.Previously published on cases.pallimed.org
After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of S’s death triggered a process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. S was sent home with a ventricular assist device (VAD) long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours S was back in for her heart transplant.
Surgery went very well, and S was out of the ICU with few complications. Yet, once S was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.
Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.
Discussion:
This was a process that was not resolved as in our modern media. The resolution was assisted by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, her family members who realized her mortality and took ownership of her suffering and their contribution to the dysfunction in their household.
In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as smiling demonstrating 'No Pain' to 10 being 'Unbearable/Excruciating Pain'. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, whatever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”
While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.
References:
1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999
2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. Volume 7 No 2. March/April 2009. (Open Access)
Original Case by Rev. Dale Anderson, BA, MDiv, Edited by Christian Sinclair, MD
Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.
Wednesday, June 26, 2013
Thursday, April 4, 2013
It's the first week of April, and we're on the verge of the penultimate games of the NCAA Basketball Tournaments. Since only four teams remain, chances are good that your favorite team is out of the tournament. As someone who has experienced that feeling 25 times over the years (but who's really counting?), I offer my condolences. To the few who still have a team in the tourney, condolences are pending for 75% of you.
In honor of March Madness, I offer a challenge. Watch the video below and follow the narrator's instructions to count the number of times the team with the white shirts passes the ball.
In medicine, the team with the white shirts passing the ball back and forth represents many of the activities of medicine. Look at all the energy which goes into deciding on the best chemotherapy regimen, the optimal time to extubate, whether to proceed with a coronary artery bypass graft or manage medically, or to get a PET scan to rule out metastases before operating. Also, it represents titrating analgesics to reach the patient's goal for pain control, discussing code status, talking about the last game to establish rapport, and educating about the benefits of hospice.
The team with the black shirts represents many things as well. Your pager going off three times in five minutes while trying to talk to a patient, the patient in the window bed launching unhelpful editorial comments, that pesky ache adjacent to your right shoulder blade, your kid waking you up three times the night before, the patient you had last year with the same diagnosis who responded unexpectedly poorly to the usual treatment, and that presentation you're scheduled to make in two days which you haven't started. It's also the TV being on in your patient's room with the channel tuned to the game featuring your favorite school. (Should it take a palliative care rotation to help one learn the value of turning off the TV?)
Medical school taught us well how to watch the team wearing the white shirts. There's so much happening in the video of medicine, it's easy to miss the suffering of the patient and their loved ones. In his classic treatise, "The Nature of Suffering and the Goals of Medicine," Eric Cassell defined suffering as a threat to the integrity of personhood. One should not equate this with a horrible symptom: The pain of natural childbirth is typically excruciating yet transient and soon eclipsed by the joy of the newborn child. Cancer pain which is now controlled by morphine may still "cause" suffering if the person fears the inability to fulfill one of their central roles in life. What if the pain comes back and I'm unable to make it through my son's graduation? What if the response to cisplatin/etoposide isn't durable? How long will it be before the other shoe drops? Unique to the individual and potentially isolating, one person may struggle with these questions given a particular illness or symptom while another person may struggle with an entirely different set of questions. We maintain hope that by keeping our eyes on the ball, maybe the questions will stop appearing. When faced with a serious, incurable illness, if a question fades you can count on another to appear, all the way through the loved ones' grieving process and beyond. We have shockingly little control over this fact.
I take pride in my expertise at watching the guys in the white shirts pass the ball around. This pride led to slight embarrassment when I watched the video at an AAHPM pre-conference conducted by Epstein and Back entitled, "Witnessing Suffering: An Introduction to Mindful Practice and Mindful Communication." I say embarrassment, because admittedly I found myself just as surprised at the end of the video as when I saw the video the first time about a year ago.
What to do with suffering we may not be able to "fix"? First, learn to recognize it. You don't stand a chance to fix something that you haven't diagnosed. Second, pay attention so you don't miss it. Here's where things get more complicated. You are still responsible for keeping your eyes on the ball. One might argue that suffering should be "the ball." You won't find any argument here, but the rest of it is still there. Mindfulness, or the practice of bringing one’s complete attention to the present experience on a moment-to-moment basis, may help you with all the layers present, some which may opacify the lens through which suffering may be found.
If this isn't something you've considered before, you can start by thinking of the this as an exercise in efficiency. Where there is suffering, you will likely find what is most important to your patient at that moment and from there, decide how much focus to place on everything else. Which of your many potential actions will maximally reduced the suffering? You will find yourself closer to the heart of patient-centered goals of care.
Sometimes, there are no balls, no players- nothing which can be "fixed" and only a patient, a physician, and suffering. In this moment, you cannot fulfill the task of fixing problems which society assigns to physicians and we to ourselves. In our own isolation, we can be mindful of it in the present moment, be aware of the feeling of inadequacy, increase our focus on the person sitting in front of us and thus offer hope of reducing that person's isolation.
Need research regarding the benefits of mindfulness to the clinician? Here's just one study. It demonstrated that primary care physician participation in a mindful communication program was associated with short-term and sustained improvements in well-being and attitudes associated with patient-centered care.
Have I piqued your curiosity with this brief introduction? Ample information about mindfulness exists on the internet. Epstein and Back pointed to an intriguing four day workshop as an opportunity for clinicians who face serious illness and mortality in their practice to learn more about the topic.
by: Lyle Fettig (@lfettig)
Thursday, April 4, 2013
Wednesday, March 24, 2010
A couple of weeks ago I posted on the Archives of Pediatrics and Adolescent Medicine article “Considerations About Hastening Death Among Parents of Children Who Die of Cancer." That study and the study I’m writing about here are retrospective cross-sectional surveys of parents whose children died of cancer at least one year previously. Joanne Wolfe, MD, MPH of the Dana Farber Cancer Institute, Boston was on both research teams.
This study, "Symptoms and suffering at the end of life in children with cancer: an Australian perspective" was published in the Medical Journal of Australia in mid-January. The abstract is here.
In the study’s introduction, it was pointed out that previous international studies may not apply to the Australian milieu since compared to many other developed countries there are system limitations in access to experimental cancer treatments and fewer pediatric oncologists available, also Australia's population is dispersed over huge physical distances, which leads to the development of local and regional treatment centers.
Here are some data highlights:
- Offered out-of-hospital palliative care: 82%, 75% opted in. Satisfaction rating of very good or excellent for out-of-hospital palliative care: 74%
- 47% received cancer-directed therapy in the last month of life, with 33% experiencing significant side effects. The perceived goal of cancer-directed therapy was 33% palliation, 12% extending life, 12% ensuring everything had been done. Children who received cancer-directed therapy during the end-of-life period suffered from a greater number of symptoms than those who did not receive treatment (p = 0.03).
- 63% had time to plan death location, of these 89% preferred to have the child die at home, and of these all except two died in the planned location; 61% died at home. Of those children who died in-hospital, almost 25% died in an ICU. Life-sustaining treatments were pursued in only 8%.
- Descriptive statistics were presented about symptoms, suffering, treatment and treatment success. It was notable that there was a significant gap between symptom treatment and treatment success. Despite this, 83% reported the death of their child was somewhat or very peaceful.
In conclusion, the authors noted “relatively high rates of death at home and low rates of heroic medical interventions suggest a realistic approach to care of children with cancer at end of life. However, many Australian children who die of cancer suffer from unresolved symptoms. Greater care should be paid to palliative care for these children.”
Some thoughts
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
I think that taken together these two studies highlight the problems of under-treatment and late-treatment of symptoms in children with end-stage cancer, as well as importance of appropriate, anticipatory information for and communication with parents and caregivers. What caught my eye about these studies is that they were conducted and published at all, and upon further consideration, that they made it through the IRB process (having sat on one). I think that illness, suffering and death of children are psychologically white-hot. They touch upon our hopes, fears, guilt and shame, as health care professionals, and even more personally as family members ourselves, and as human beings.
I for one experienced the post-natal death of a sibling when I was seven-year-old; I rotated in the PICU, and routinely worked in a busy, urban children’s hospital emergency department; my young-adult son is training in the Army National Guard at this writing. The death of children, its memory, and the threat of death can loom very large indeed.
One appealing fantasy that may be afoot, which I know I can entertain, is that if we were just having EOL discussions earlier, and better prognoses where being made, and change of goals were initiated sooner, and these hospice -appropriate patients were enrolled in hospice earlier, then these kids and their families would suffer less. Certainly not very parsimonious, these are a lot of complex conditions. Even if we were able to smooth this terrible path some, and see greater and earlier enrollments into hospice, there is still the dying, the dying child and the child dying from cancer.
The expectation that we would be able to attain ideal symptom control if we were just given a fair shot, in a process as chaotic, dynamic and malignant as end-stage, pediatric cancer, is I think a fantasy. Alternatively there is doing one’s best by a patient, attending to the symptoms and the suffering in a context that is congruent and meaningful that is perhaps healing and even protective, especially for surviving parents, siblings, and other caregivers.
The Australian situation is different from other parts of the developed world as noted above. Perhaps an analogy might be drawn to the health care situation in rural and remote portions of the United States, where there are logistical barriers and cultural differences, and so the experience, meaning and memory may be different. That being said, even in the face of a yawning gap between symptom treatment and symptom treatment success, these parents were largely satisfied with the palliative care they received, and recalled the death of their child as being somewhat or very peaceful.
I think that there is a strong place for information, appropriate expectations, empowerment, good will, attention, professionalism and narrative to make a crucial difference in the experience of suffering, dying and grief, even, or especially in the case of children. That imperfect work is ours.
Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, & Wolfe J (2010). Symptoms and suffering at the end of life in children with cancer: an Australian perspective. The Medical journal of Australia, 192 (2), 71-5 PMID: 20078405
Wednesday, March 24, 2010
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