From the show description, a surgeon reflects on how Americans face death:
Physician and author Pauline Chen says families are the key to helping their loved ones especially when it comes to communicating with doctors. But families too frequently are unprepared for the experience, when they don't have to be.
This is a discussion and chat TRANSCRIPT. Thank you for reading.
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Julia Schrenkler
Interactive Producer
Minnesota Public Radio
American Public Media
Objects in Mirror
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Comments: 57
Thanks to Bruce for the recommendation.
I would like to know if it is possible to move a stubborn family member beyond the denial stage when their loved one is passing. Also, can this benefit not only those who are being left behind - but the one who is dying?
More work certainly needs to be done. Thank you.
D.......................
man's father and the lengths his son goes to in order to
make sure he is comfortable. It is a movie and so distorted
and in a way kind of silly, but one thing is that the father
is given heroin to make him feel better. This makes the
movie controversial and silly in a way, but what about pain
medication and why is it so restricted. Is it overly restricted
when someone terminal, or for that matter when someone
just has pain and is there rational thinking behind this?
If I had a certain amount of time left, I don't know why it
should not be up to be to decide how to handle my pain,
and why it should not be up to the rest of society to help
me do that once I am "scheduled for departure"?
I hope this does not seem flippant to ask, but I can not
see anything worse than being forced to think only about
how much pain, mental of physical I am in while I am
waiting to pass on. Without a lot of pain do people tend
to hang on longer, and is that some kind of factor?
Pauline Chen replied:
Dear Larry, It's difficult for me to say what are appropriate personality qualifications for a hospice volunteer as I have only worked with hospice as a referring surgeon. My impression, though, is that the situation for hospices is much like health care in general: a more diverse staff is better able to serve the diverse patient population.
And again like health care in general, I would also assume that it helps to be compassionate and open-minded. Compassionate because that is essential to any kind of health care. Open-minded not only because you will be caring for people with different definitions of a "good" or "dignified" death but also because you may be, as I have been, surprised by how much you can enrich yourself by caring for the terminally ill.
If you are interested in volunteering, I would contact the hospice and ask them if they are looking for specific kind of people. My guess is that they would welcome interested volunteers.
Pauline Chen replied:
Dear Alysen, I don't know if there is a group of people working specifically on more compassionate care for family members of patients who are comatose, but I do know there are people who have been working toward better care for patient families in general. Those people are the nurses, social workers, chaplains, and the many allied health care professionals. Unfortunately, I don't think many doctors, especially those doctors in training, always do the best job with patient families.
Young doctors are so focused on getting their clinical tasks done that they tend to forget their patients' families and friends. In my own experience, it was often the nurses, social workers, and chaplains who provided the constant reminders -- to keep families apprised of all that might have been going on, to schedule family meetings, to be as present for the support network as for the patients themselves.
Although I am now a big proponent of caring for family and friends, I was not always that way. As an intern and junior resident, the nurses were endlessly paging me, asking me not to forget the patients' families. I probably should have known better, given my medical anthropology background, but I was as hassled as the next resident and trying to cut every corner possible so that I could finish my list of tasks and get my precious15 minutes of sleep.
The nurses I worked with helped to remind me that family and friends are the people who are left to pick up the pieces after the patient dies. If unresolved issues aren't addressed in some way during the process of dying, the survivors must deal with those issues for the rest of their lives. That is a terrible burden to have to bear.
When a patient is comatose, the experience for the family becomes even more difficult in many ways because it is impossible to communicate with the patient. Initially, too, comatose patients are often in an intensive care unit setting, which in itself can be a terrifying experience for anyone who has never worked in a hospital.
Because of reforms initiated by health care professionals interested in palliative care, work by patient advocacy groups, and increased participation in health care decisions by patients themselves and their families, the family experience has improved over the last 20 years. But we still have a long way to go. I hope my book Final Exam helps to push things along a bit in this regard.
Pauline Chen replied:
Dear Marlene, I had a similar experience a couple of weeks ago when my fourteen-and-a-half year old dog died. During the whole process – which was deeply compassionate -- I couldn't help thinking, "I wish we human docs could do as well as the animal docs."
In regards to contact with families after patients have died, I have to be honest and say that I never regularly sent families letters of condolence. But I think my own recent experiences with my dog's vets have changed how I view these kinds of notes and have influenced what I will do in the future.
Pauline Chen replied:
Dear Christine, I'm convinced that the vast majority of doctors care deeply for their patients. In fact, I don't know of a single doctor who doesn't feel deeply for the patients he or she cares for. What I wish, though, is that the divide between doctors and patients wasn't so large and that the experience you had with your surgeon could happen more frequently to all of us.
Pauline Chen replied:
Dear Kathy, I am so sorry about your experience with your mother, especially since you have done so much to help others at the end of life.
What so many of us – doctors and non-doctors—don't always realize is that denying mortality affects more than just ourselves. I think one of the most well documented examples of this denial and its repercussions is the pattern of hospice enrollment. Doctors, as well as patients and their families, are hesitant to enroll in hospice programs until the final days before death, until death is imminent. The data on hospice usage shows that more than a third of patients who enroll in hospice die in seven days or less. With such little time, the patients and the families have little opportunity to take advantage of the tremendous support programs available in hospice. It's really a pity because these programs are terrific. As one hospice worker once told me, "We don't help our patients to die; we help them to live."
Pauline Chen replied:
Dear Bruce, Thank you!
-Julia
-Julia
within the medical community about a physician's role in the death of a
patient.
I would like to know if it is possible to move a stubborn family member
beyond the denial stage when their loved one is passing. Also, can this
benefit not only those who are being left behind - but the one who is
dying?
...and how to move beyond that kind of hope? Doesn't it improve the last
days if you can come to grips with the fact that death is imminent?
Diana Raabe
Dear Diana,
It does make the dying process more difficult for all involved when one person, be that person the patient or a family member or a health care professional, is in denial. But to a certain extent, that denial is quite understandable. Death is difficult, no matter how you look at it, and so denial can sometimes be the "path of least resistance."
Additionally, denial can sometimes be helpful. Take the case of doctors themselves. Some of the most heroic and compassionate feats in health care have been possible because of a certain level of denial. A truly moving example of this is Dr. Carlo Urbani, the Italian physician who was the first to treat and identify SARS (Severe Acute Respiratory Syndrome), notify the World Health Organization, and thus trigger a massive public health response that saved the lives of millions. In treating patients, however, he contracted the disease and died in 2003 at the age of 46, leaving behind a wife and three children.
In the case of end-of-life care, denial often stems from past issues that are brought to the fore by a loved one's imminent death. While I don't think health care providers can resolve these issues, I do think we can help the process of dying by appreciating their complexity, understanding the impact of impending loss on them, and, perhaps, by facilitating the process of addressing them.
My dog, who was 14 and a half years old, died a little over two weeks ago. Granted Isaac was just a dog, but he was nonetheless quite special to me. I thought I would have had a fairly easy time handling his death since I had thought about, talked about, and written about death quite a bit over the last few years. But it was very hard to see him die.
The one thing, though, that all that thinking, talking, and writing did help with was being present when Isaac finally died. I think was able to be more present in the moment because I had thought through many of the issues before hand.
And that was a real gift for both of us.
I think the grieving process is different for different ages, as it is different for people from different backgrounds. One of the things that I think is important for doctors to do is to try to create an environment where patients, no matter what age or background, can feel comfortable at the end of life (or facing the death of a loved one).
The loss of a pet is the loss of a companion for many people. Dr Chen's point about being present is one we should keep in mind.
monthly on my behalf, Ra doctor has everything now on the CPU for my
other doctors to look up everything, from last treatment to Medication
list so on, I have a great team of specialist, What do you think about
the Oregon law for the right to died act, where they take a cocktail and
in three minutes they are gone? I am a christian, so this really ways
heavily on me , as is it moral act............
D.......................
dee-dee Wishes you the best life has to offer S.,
Dear D,
I personally prefer at this point to focus on improving every patient's access to quality palliative care. I don't think we have yet optimized palliative care in our health care system. Until we do so, until we are able to offer consistently to our patients quality palliative care, I don't feel comfortable with any kind of opinion on physician-assisted suicide.
In the ideal situation, that sense of being partners together in caring for the loved one is in place before end-of-life care becomes an issue. Unfortunately, though, many situations are not ideal.
I think that one of the first things people can do is approach the doctor or doctors directly. I know from my own experience that many of us doctors would like to begin the discussion about end-of-life care and the "team care" relationship but are worried that bringing up the subject might be too overwhelming for a patient's loved ones. So it's almost a relief to know that they are on the same page.
I would also suggest discussing this "team care" relationship and end-of-life care with the many health care professionals other than doctors. The nurses, social workers, and chaplains, for example, are often terrific resources who can help bring this topic up with the doctors and the other members of the team. This can be particularly helpful when people are having a hard time talking to the doctors about these issues.
One of my grandmother died in her early 90's. She went gracefully, and quickly, so the family was able to treat it as an occaison to unite and celebrate and the grandkids had a great time playing football at the wake.
My grandmother on the other side of the family lingered, and suffered. She eventually died painfully, of what appeared to be hospital induced dehydration.
I suppose the point I am trying to make -- is one of grace.
Glad you could join the chat, Greg. I wish more of us could experience a death as a way for a family to unite.
Thank you for sharing your experience and your point. I am very moved by the stories of both your grandmothers.
I completely agree with you that the graceful death of one we love -- however grace is defined by each person -- can be a deeply meaningful and enriching experience for all involved. It's my hope that my book, Final Exam, will begin to encourage people to have the kinds of discussions that are important for that type of grace -- discussions about how we want to die, where we want to die, and so on.
Beautiful and important point. Thank you.
man's father and the lengths his son goes to in order to
make sure he is comfortable. It is a movie and so distorted
and in a way kind of silly, but one thing is that the father
is given heroin to make him feel better. This makes the
movie controversial and silly in a way, but what about pain
medication and why is it so restricted. Is it overly restricted
when someone terminal, or for that matter when someone
just has pain and is there rational thinking behind this?
If I had a certain amount of time left, I don't know why it
should not be up to be to decide how to handle my pain,
and why it should not be up to the rest of society to help
me do that once I am "scheduled for departure"?
I hope this does not seem flippant to ask, but I can not
see anything worse than being forced to think only about
how much pain, mental of physical I am in while I am
waiting to pass on. Without a lot of pain do people tend
to hang on longer, and is that some kind of factor?
bruce k.,
Dear Bruce,
Pain management in general and for the terminally ill specifically has advanced quite a bit over the last two decades. I don't think it is at all flippant to ask about pain at the end of life. End-of-life care experts have long considered the presence of pain to be an indicator of the quality of palliative care.
In 1995 the Journal of the American Medical Association published the results of a landmark end-of-life care study (the SUPPORT study) that involved five academic medical centers, hundreds of physicians and thousands of patients. The SUPPORT researchers found that fully half of hospitalized patients who remained conscious at the end of life complained of moderate or severe pain at least half the time. Here was incontrovertible proof, it seemed, that not only was there poor quality of care at the end of life but also that dying patients were suffering.
A few years later in 2001, the Lancet, another highly respected professional journal, published another study which looked at almost 1000 terminally ill patients and which challenged the perception that pain is undertreated in the dying. These researchers found that most terminal patients did not want more pain medication. Fewer than a third of patients with moderate to severe pain and less than a quarter of all the studied patients who received treatment in the previous month wanted more pain control. Instead, most patients were willing to tolerate pain because other considerations, such as what they perceived to be the side effects of pain medications, were more important to them.
Some experts believed this second study indicated that pain was thus a poor indicator of quality of care. Taken together, however, I believe that both studies' results point to the same problem: that we were not only inadequately treating pain in the dying but that we were also failing to address concerns and misperceptions among patients regarding therapies for pain.
So Bruce, I don't think it's flippant to ask the questions you ask. In fact, I think it's important to ask them, to talk about them, to educate ourselves. Pain management specialists can do a lot these days to control pain, but we need to talk to each other to benefit. We need to ask the questions, to educate one another, and perhaps, then, at some point in the future, it will be a given that people at the end-of-life do not have to worry about pain control.
That's a very important question. In a hospital setting, because doctors and nurses are so focused on caring for the patient, it can be immensely helpful for all involved parties if a single person is designated as the representative who will talk with all the health care professionals and will bring the information back to the family. That person can also bring up loved ones' concerns to the health care staff and can help to initiate family meetings -- meetings where the doctors and nurses and other health care providers meet with all the family members to discuss different issues.
With a single family representative, it definitely helps to have a phone tree or some established communication pathway. This way, everyone will get the information and will be able to express their concerns, and the health care professionals can address both the patient and the entire family most efficiently.
painkillers throughout the day. What I'd like to know is how to
effectively advocate for one's dying loved one(s) and get appropriate
treatment. At one point, people came out to turn off the defibrillator
and accidentally left it on. At another point, a nurse questioned the
use of morphine, which our father specifically requested. Does your book
go into those issues? We worked it out but we had to make last minute
calls and be very pro-active and assertive.
J Corn
Just to be clear, his cardiologist had noted he was dying, no hope, the
heart was failing after repeated surgeries and he could not move from a
chair. My father opted to stop taking his meds, a sure death sentence.
J Corn
Dear J,
What I hope my book helps to illuminate are some of the obstacles to end-of-life care from my own experience and from the wealth of research that has been done on end-of-life care in this country.
I do think that it is important for all of us to be very pro-active and assertive. We all have choices in end-of-life care, but it is up to each of us to make those choices and to tell others about them. Sometimes, too, as was the case unfortunately with your father, we have to assert our wishes upon those health care professionals who should in fact be partnering with their patients. I believe the onus is ultimately on physicians to create an environment where people from all backgrounds can talk comfortably about what they want at the end of life, but I know that this doesn't always occur.
not visit the hospital to see her becuase I knew it was bad. My mom was
fatally injured. Even at that age, I allready had problems of my own,
but nothing prepared me for what life would be like without that person
who I depended on my whole life. I guess it was denial, I remember a
pharmasist in the family giving me and my grandmother a valium. When I
think about it the pain of loss isnt something that could just be pilled
away. Do you think doctors may be circumventing a natural, emotional
mourning cycle by treating depression in survivors?
Stanley Nipper
Dear Stanley,
It is natural to grieve loss and death and to feel great sadness. There are cases, however, when that sadness becomes profoundly disabling and falls into the realm of what is not part of a natural emotional mourning cycle. When an individual is suffering from that type of depression, for whatever reasons, I think most doctors would recommend some kind of therapy and perhaps the help of a mental health professional.
essential - but it is difficult I think for surgeons and other doctors
to do this - one, they do not know what the outcome will be - and a
family will cling on to hope, perhaps even beyond a reasonable
expectation, having been in this situation before.
More work certainly needs to be done. Thank you.
Kathryn Esplin-Oleski,
Dear Kathryn,
It is increasingly difficult for doctors to predict the moment of death. In the past, dying was often marked by a single, catastrophic trauma or illness, and death was a discrete time point. However, with all the amazing advances in medicine over the last century, the nature of the end of life has changed dramatically. The vast majority of us will deteriorate not suddenly but slowly, over the course of several years from a chronic illness. Which means that the time course of our last years will likely be a slow decline, punctuated by occasional plateaus and even temporary improvements.
This kind of time course makes it very difficult for doctors, patients, and family members to prepare for the death of a loved one. But this time course also makes it now more important than ever to talk to one another – before, during, and even after the dying process. Communication has become, I believe, an absolutely necessary component of good end-of-life care and good health care.
year now. I think the hardest thing for us is that we're not
particularly social so it's very difficult to find a doctor that
"meshes" well. Most of the doctors I've met are two-second docs- meaning
they see as many patients as they can for as little time as they can and
don't show any genuine empathy for the patient. They need to set up
doctors websites like singles websites so that you can find a doctor
that not only has the skills you need but the bedside manner that will
help with the emotional side of your aliment.
L. Albert Miller
Dear L. Albert,
It is important to find a doctor with whom you have good rapport, particularly when your doctor is likely to be someone who will help you navigate not only your personal health but also your end-of-life care.
What I find unfortunate, though, is that most doctors want to be compassionate and want to spend time with their patients, but they don't always do so. Many of them feel hemmed in by the health care system in which they practice; they want to spend more time with their patients but are penalized, if they do so.
and will check-out the archive later. In my work as a critical care
nurse, I find that even as a patient care advocate (and family), that
the majority of physicians won't, or don't, take the time required to be
an effective communicator with the family. THE most important thing that
a physician can do is have direct, consistent eye contact with an
empathetic manner. I will say that I work with several physicians that I
highly respect that DO take the time to either call the family or have a
family conference....and we (as nurses) sit in on the conference as we
have bonded with the patient and family. And for those physicians that
don't want to take the time....we encourage them :>))....and are
sometimes successful and sometimes not. True empathy is learned through
life experience....and if a physician has walked in their shoes....they
will, of course, be much more effective and pro-active in the complete
care of the patient AND the family.
Cindy S
Dear Cindy,
I completely agree with you that life experience does help physicians, or any health care professional for that matter, become more effective and empathic. Unfortunately, even those doctors who are profoundly compassionate have difficulty spending time with their patients within the current health care system.
I had the privilege of spending an afternoon with some senior doctors in New Jersey a few weeks ago, and every individual in that room could remember patients of theirs who had died 10, 20, even 30 years ago. They all cared deeply about their patients and patient families, but every one of them also mentioned how difficult it was to spend the time that they wanted to with those patients and families. Several mentioned being reprimanded or penalized when they went over, for example, the 15-20 minute allotments for return patient clinic visits.
I think it is difficult as a single individual, doctor or non-doctor, to change the entire current health care system. But, I do think that it is possible for each of us to change a small and important part of that system. That change is talking more openly about what we want and what our loved ones want at the end of life. If more of us began talking about death and dying, rather than turning away from it, I can't help but believe that we would be making remarkable changes for the better for not only those we love but also for ourselves.