The format is wrong on the
papers from New Orleans, shall redo ASAP. Susan, May 10, 2005
DR. JAY THOMAS, Assistant Clinical Professor of Medicine
I'm very honored to be here. I consider it a great privilege to be
speaking to patients and their families living with this disease in their lives
at a very difficult and trying time in their lives, and I consider it a very
high privilege to be here to speak to you a little bit about what's near and
dear to my heart.
What I'm hoping to accomplish today is to first of all, give you two
definitions: define what palliative care is and what hospice is. And I'm going
to spend the bulk of my time talking a little bit about the philosophy of
hospice and kind of the nuts and bolts of what hospice actually means in detail.
And hopefully, by the end of my talk, I'm going to have given you some
useful information and you're going to ask me a bunch of good questions.
Because I've seen that you ask really pertinent questions. Hopefully, through
both of those processes, you're going to be able to figure what the role of
hospice may be in your own lives and in the lives of your families.
The definition of palliative care is the active total care of patients who
have a disease that isn’t curable. Now, when you think about it, there's
actually very little that we can actually cure in medicine.
Let’s think about heart failure. It's a very common illness unfortunately.
We can't really fix it. We give a lot of different medicines to make it better.
And that's what palliation is. It's to make something better. We have beta
blockers and inotropes and diuretics, a whole bunch of different categories of
medicines we use to make life better for people with symptoms of heart failure.
But we can't really cure them. Even if you get a heart transplant, people still
have to be on immunosuppressants. Well, they're not really back to their normal
state. And so unfortunately, that's really the state of most of medicine.
There are people who can be cured with surgery, but unfortunately a lot of
people have to live with chronic illnesses like diabetes and emphysema. Now
what's hospice in that context? It's again, the active total care of patients
where we can’t cure the process but are likely facing death in six months or
less. I'm going to talk a little bit later where that number six months comes
But I really want to focus on those words "active total care." Oftentimes
hospice is thought of as: Well, you know, there's nothing more we can do. Go on
to hospice. And I really hope to dispel that notion. There's a whole heck of a
lot we can do when we can't cure a process like cancer or carcinoid when it's
When we talk about total care, we're talking about not only focusing on
the disease, but the person who has the disease. It also includes the social
context they are in and that means their family, however they define that
family. The bottom line goal is if you can make each day little bit better.
Hospice is the subset of that palliative care where someone is facing the end
of life, likely within six months or so.
So what are the goals of hospice here? We really try to focus on treating
the person not the disease. Sometimes people have advanced cancer and they may
opt to go for one more round of chemotherapy. What they're hoping for is to
increase their quality of life.
Unfortunately, sometimes it turns out that the side effects from the chemo
are pretty high and they really don't get that much length of life added with
good quality. Sometimes, just because we can do something, we often do it. But
the question is, “Does that really enhance that person's life?” That’s what we
focus on in hospice. Any intervention makes sense if it makes your life better.
Sometimes it's worth putting up with some short-term costs for a long-term gain.
There are some times, unfortunately, the long-term gain isn't there. And
it's not worth the short-term cost. The quality of life would be better had
they foregone that intervention. That's a hard decision to have to make. I see
my role as a physician to help people make decisions about when to make what
kind of intervention.
So really, hospice is about maximizing both the function and quality of
life. It's not necessarily length of life. But it turns out, as we're
learning more from research, when we give people exquisite symptom control, they
often live longer even when we're not trying to cure the disease. That's an
interesting concept. Hospice’s other goal is to minimize suffering, not only
for the patient but again for the whole family unit.
What about hope? Often times it's thought: well, if you're referred to
hospice, that means there's nothing more we can do and there's no hope.
Unfortunately, it may be scientifically and medically true that there is no hope
for a cure. I'm actually a religious person, and I believe in miracles—
personally. But from a medical and scientific point of view, there may be not
hope for a cure.
But does that really mean there's no hope? In my medical experience, it's
been amazing to see how people do define new kinds of hope in their lives.
There is hope that their symptoms can be controlled. There is hope they can
find new meaning to wake up each day. There is hope that there can actually be
growth at the end of life.
And one of the major hopes is that there can be peace before death. Not
only in patients' lives but in their family's lives as well. Maslow is a
psychologist who has studied people's needs. Let me share with you what he
thought and how I apply it to hospice and palliative care.
Here at the bottom of this pyramid, we're talking about physical needs.
That's food, clothing, shelter. It's basic stuff that you've got to have, the
basic needs. And then once you've got that, you want to be safe. And then
after that, everyone has a need for love. There's also a need for having self-
worth or self-esteem. And at the top of this pyramid there is something he
Well, let me just translate that into how I see hospice coming alongside
patients and their families to help them climb up this pyramid.
At the bottom of this pyramid is controlling physical symptoms: pain,
shortness of breath, nausea, vomiting, those kind of basic things. In terms of
the safety needs, it means making sure you have a secure environment where
you're being tended to, you're not going to be abandoned and you have your needs
There's something called Advance Directives. They are things like living
wills and Durable Power of Attorneys for healthcare. Those are special
documents that allow patients to designate what they want done when they can no
longer speak for themselves, which again, is a way to empower people to still be
in charge of their lives and take some control even when their disease is
rearing its ugly head.
We all have love needs. We have very personal relationships: family,
extended family, community, community-based groups that we're a part of
whether it be religious, spiritual, or cultural. Hospice tries to help people
deal with these relationships as well. Making sure that people still have some
sense of dignity and self-control as they approach the end of life is the next
kind of role hospice engages in. Finally, at the top of the pyramid are issues
like value and meaning and peace. Someone may think, I have this disease that
may take my life shortly. Why should I wake up in the morning anymore? How do
you redefine hope and meaning and value when death may be approaching?
How do you help someone have peace before they die? If you're puking your
guts out, you're writhing in pain, it's hard to contemplate these things that
are at the higher end of the pyramid like peace. If you’re estranged from a
loved one, it may be hard to be at peace. If there’s something that you always
wanted to do and you won't feel fulfilled unless you try to do that thing, it
may be hard to be at peace. If someone questions what happens when we die or
is angry at God, it may be hard to find peace.
These are existential and spiritual issues. What I see as the highest
value of hospice and palliative care is to come alongside patients and their
families to help them deal with these issues and to help them find a sense of
peace before they die.
Well, what about the nuts and bolts? How does this philosophy actually
play out in day-to-day life? The federal government back in the early '80s
legislated the thing called the Medicare Hospice Benefit. Other insurance like
Medicaid and all other types of private insurances that I'm aware of mimic the
Medicare Hospice Benefit.
So what are those nuts and bolts? To be eligible for hospice, someone has
to have an incurable process. If the disease runs its normal course, they would
have prognosis of less than or equal to six months. That would have to be
certified by a patient’s regular physician and it has to concurred with by a
hospice physician. The other important aspect is that patients accept the goal
of palliative treatment as opposed to curative treatment.
And what are the benefits that you get from signing up for hospice? All
the medical care by healthcare providers that someone needs for the hospice
diagnosis, which is provided free of charge, 24 hours a day, 7 days a week. All
the medications that are relevant to the hospice diagnosis are also provided
free of charge. And finally, all the medical equipment that someone needs is
provided free of charge - wheelchairs, oxygen tanks, hospital beds, physical
Now how does that care actually get delivered? The core concept of
hospice care is that there is an interdisciplinary team where everyone is
interacting and communicating about the patient and their family.
And the center is the patient and their family. And that really is the
unit of care that this team is focused on helping - that patient and that family
The patient's primary doctor, whether that's a general internist or an
oncologist, is part of the team. The relationship isn't broken when someone
goes on to hospice. We try to enhance that relationship. A hospice physician
is also part of the team. I see myself as kind of hamburger helper for the
primary physician. I see patients with my little old fashioned doctor’s bag; I
go out to patients' homes when patients can't go to their doctor's office
anymore or it's just too much of a hassle for a patient because of pain or
whatever reason. I can go out there and be the eyes and ears and hands of my
colleagues, your regular doctor.
And I can feed that regular doctor all the information he needs. I can
listen to hearts and lungs, and I can make a recommendation. But I don't take
over care, I just augment your relationship with your own doctor. Sometimes I
do take over care because it's just more convenient, and I may have more
knowledge about what's going on medically at that point.
The primary point of contact medically is usually one of our hospice
nurses. And that nurse would come out once a week, twice a week, three times a
week, even every day if necessary depending on the level of need.
There's also a member of the team called a volunteer. The Hospice
Medicare benefit actually dictates that you have volunteers. The fact that
people volunteer their time without being paid means the hospice program has
community support. So that's why they made that a legislated component of the
Good volunteers can be crucial elements of the team. They can come into a
home and spend an afternoon and let the caregivers go off and go shopping, go
get their hair done, go bowling, whatever. It can be an important part to
enhance the family's quality of life.
here are also social workers who have lots of knowledge about
trubleshooting. They know about lving wills, durable power of attorney, the
healthcare or finances, what insurance people qualify for. They can help
And there's also a team member here called the chaplain. It’s often a
very misunderstood member of the team. Oftentimes when people hear the word
chaplain, they think of a religious person. And we also get two kinds of
reactions to a chaplain. One is: Well, I'm not a religious person so I don't
need a chaplain. And the other one is: Well, I am a religious person; I already
have a religious community. So I don't need your chaplain.
So I really want to make sure you understand what the definition of this
person called a chaplain is. It really is someone who has special training in
coming alongside people at the end of life. They have no religious agenda.
They're really just trained active listeners who very much are aware of the
spiritual or existential pains that people face at the end of life. Why should
I wake up? How do I say I love you? How do I say please forgive me? Not that
someone has a formula. You do this, this, and this, and I'll guarantee you're
going to get peace. Nobody does that, trying to cram something down someone's
throat. They listen. They listen to what's on people's hearts and minds and
they help people reframe these things. People may process things more
efficiently. Sometimes people can talk about things they can’t talk about with
So it's actually a very crucial member of the team. Unfortunately, about
50 percent of the people say they don't need a chaplain. And that makes me feel
sad often because I actually think it's a valuable member of the team.
Sometimes people who say I don't need a chaplain have later let a chaplain come
in. They've met the person, and they said, “You know what? If I had know this
was a chaplain, I would have asked for one a long time ago.
And so hopefully, I've just given you a little bit of a feel for what a
chaplain is. It's really not a religious person that has an agenda to change
you. It's not that at all. It's someone who listens to you, who meets you
where you are, and helps you go where you want to go.
All these team members that are in pink (pointing) are all defined by the
Hospice Medicare legislation. Then there are these allied services are in the
slightly off purple color. That includes people like home health aids. They
are people that can come into your home to help you with menial kind of chores.
They may do dishes, maybe do some vacuuming, maybe help you get the patient in a
shower if needed. They may be able to stay with your loved one or a patient for
an hour or so, so someone can go run some errands.
There's also physical therapy. The goal is to optimize function. The
goal isn't: wll, you know you're on hospice. It's time to stay in bed and hang
morphine and that's all she wrote. The goal is to optimize people's function.
So even though people are dying and having a harder time getting out of bed and
getting around, we use physical therapy to help them keep doing what they want
to do and help them meet their goals.
There's also complementary medicine. I think you heard a talk yesterday
about some of these modalities. We have acupuncture, aromatherapy, music
therapy, harp therapy, and massage that can all be used to enhance quality of
life. They also can treat patients' families as well. So again, the whole team
is dedicated to improving quality of life for the patient and their family at
the end of life.
Where is the hospice? Where do you go to get it? There actually isn't
one place. Hospice is really more of a philosophy of care. Hospice is really
wherever you are.
It turns out that where I work, we have about 600 patients. We have about
40 inpatient beds and that means that about 560 patients are in their homes.
That's where the bulk of the hospice care is really, in patient's homes. That's
what's called routine home care. Nurses visit. The chaplain visits. The
social worker visits, and sometimes I go out there with my doctor bag too.
That's how most of hospice care is delivered.
Sometimes there's crisis - a crisis of pain or sometimes the level of
function decreases drastically. Where someone could get up and go to the
bathroom, now they can't, and their family can't really help them do that. We
have the ability to do something that's called crisis care. We bring staff in
for short periods of time to stay 24 hours a day until the crisis passes.
Sometimes we can't take care of things in the home and then we admit
people to an inpatient level of care. Some hospices have their own dedicated
inpatient unit. And I'm fortunate that I work at a hospice where we have about
40 inpatient beds. We can do some things that we can't do at home. Certainly,
there are medications that we deliver to inpatients that we can't provide at
home because it requires different techniques or we have to monitor certain
things. So that's an advantage of coming into an inpatient facility. Sometimes
people or their families can't cope with things at home anymore. Sometimes
patients don't want to be at home when they pass away, so we might move them to
an inpatient facility.
When we bring people in to our inpatient unit, it’s not anything like the
regular hospital. Let me describe what one of our inpatient rooms look like.
They don't look like any hospital room probably you've ever seen. All the
medical gizmos are hidden unless you need them. There's an oxygen hookup, but
if you don't need oxygen, it's hidden behind a wood panel.
We have hardwood floors. There are wood cabinets; there's a TV and stereo
system. There's a couch that folds out into a full bed that allows family
members to stay overnight. We've had people sleep on the floor as well. We've
had as many as ten people stay in one of our hospice rooms. They're really
pretty nice. Sometimes, unfortunately, if we don't have room or there's
something that requires a regular hospital, we have the ability to admit people
to regular hospitals, but still under hospice care. Our team actually comes and
visits them while they're in the regular hospital.
There's one other last kind of care that’s called respite care. With
respite care, there’s really nothing new medically with the patient but the
family just needs a break. A patient may go into a facility for a week or so
just to let the family recharge their batteries. Those are the different kinds
of ways hospice can deliver care at different locations, but the bulk of care
occurs at home.
Now what about the timing of hospice care? When someone has been
diagnosed with a life-threatening illness and you do everything you can
medically and scientifically to reverse that disease or cure it. Unfortunately,
at some point medically and scientifically you can't cure the disease anymore
and then people get referred to end of life care, hospice.
When you look at national statistics, the time from when a patient is
referred to hospice to when they pass away maybe is about two weeks. So it's a
pretty short time for a lot of patients who are referred even now.
I'd like to compare and contrast that with a newer concept of timing
referral to hospice. In this view, hospice partners with traditional medical
care. When someone is initially diagnosed with a life threatening illness,
there is a great deal of effort in terms of trying to modify the disease and
Still, at the very same time, there is a focus on making sure patients
stay comfortable and maintain a good quality of life. Just like you can get a
dermatology consult or radiology consult, you can request a palliative care
consult to focus on quality of life. It's a team that helps maximize the
quality of life even when you're trying to cure the disease.
Unfortunately, as options wane to cure the disease the palliative care
side of things may play a larger and larger role. And then at some point, it
becomes clear that were not going to be able to cure the disease and it may be
time to start preparing for the end of life. After discussion with the
patients, their families and their doctors, it may be time to make a hospice
referral when think that, unfortunately, death may be coming in about six months
if the disease runs its normal course.
With an earlier referral to hospice, this interdisciplinary team can help
the patient and family focus on climbing up that pyramid of Maslow's Hierarchy
to find peace, however they define it. People can focus their energies on what
they want to focus on because suffering from physical symptoms, like pain and
shortness of breath, and vomiting has been controlled. The hospice
interdisciplinary team can also help with practical issues, relationships and
existential issue like meaning and life closure.
Eventually patients get down to the last days and hours of living.
There's a lot of focus on making sure that patients and families are supported
through this critical time and trying to make sure that that despite this being
a sad and tragic time, that it can potentially be a time of growth and
Believe it or not, we've actually had patients who said: You know what?
My dying's actually been the best part of my life. I've grown more; I've
learned more. And I’m at peace. Thankfully I have heard that many times.
That's the kind of hope that we try to bring at the end of life.
Next, there is that bereavement phase. After we've lost a loved one,
hospice doesn't go away. The hospice team stays there to help support those
that are left behind. Now, I mentioned that nationally, patients are often
referred to hospice two weeks before they die. In my opinion, that’s not enough
time to climb up that ladder of Maslow's Hierarchy to get up to the peak. There
are a lot of reasons why that may happen. Sometimes patients really don't
accept that they may be facing the end of their life. It's not like anyone has
to cram it down somebody's throat that death is getting closer. But people have
to come to terms with, in their own minds what's going to optimize their life
and death. That's a hard thing to grapple with and to talk about.
Sometimes doctors don't like to admit failure and they keep trying one
more thing. Sometimes that one more thing may cost more in quality of life than
you get back from it. It's done out of care and concern. I'm not trying to
fault doctors. It's all done because we care. But the bottom line question
from hospice philosophy is what is going to maximize your quality of life and
maybe even increase the length of life but maybe not and what is going to
detract from quality of life.
In fact, I might even choose something for myself that's to maximize my
quality of life even if I knew it was going to shorten my life. These issues
are very difficult things to talk about and think about, but often it may be
worth it because you actually end up having better quality of time to achieve
I used to think, if I were going to die, I'd just like to have a massive
heart attack, be dead. However, I've got two young kids. As I've been thinking
about this, I don't just want to drop dead. I actually would like to have some
time to know that I'm going to die so I could actually prepare my kids and
accomplish some short-term goals.
With carcinoid, the disease course is usually long. You get diagnosed and
you're at a certain level of function. At some point, there may be a health
crisis. You kind of overcome it, but you never quite get back to where you were
before in terms of function and quality of life. There may be a few more
episodic crises. Unfortunately one of these may lead to death at one point.
When we have a disease that's prolonged like carcinoid, how do we really know
when you have about six months left to live? It's really a hard thing to do.
The data is that doctors are really poor at predicting. We have a ballpark
idea, but we're really not sure. In fact, studies have shown that doctors, even
when they're doing their best, overestimate prognosis about five fold.
Unfortunately, based on that fact, when a doctor thinks that there are about six
months left to live, there may really only be a few weeks to a few months left.
In light of this, the question that we physicians should ask ourselves is,
“Would we be surprised if someone passed away in the next six months?” We're
hoping the answer won’t be “No, I really wouldn’t be surprised.” We're doing
everything we can to help someone have a quality day. But if that's a
possibility, I would think it might be time to think about calling hospice.
But what happens if six months comes and goes? There's no penalty for
that? The Medicare hospice benefit keeps going. We actually have patients
who have emphysema or congestive heart failure. It's really hard to predict
when people with those diseases will die. People with congestive heart failure
50 percent of the time will have a sudden death. They may be feeling great.
Fluid may not be in their lungs and their heart may be pumping as well as it
can. But BOOM. All of a sudden they can go into an arrhythmia and die 50
percent of the time. How do you predict something like that? Insurers
understand and recognize that for the most part. What physicians must do to
renew hospice is to simply ask the question every six months, “Would I be
surprised if this person passed away in the next six months if the disease runs
its normal course?”
As an example of how hospice can work for someone, let me tell you about
one of my friends who died this January. He was 40 years old. He was married.
His wife was a few years younger and she was pregnant with their first baby.
She was about three months pregnant and he found out he had lung cancer.
Unfortunately at the time they found it, it had already spread to his bone.
He went through one round of chemotherapy and unfortunately, there really
was not much shrinkage of the tumors. Unfortunately, the cancer spread to his
brain. He got radiation therapy for his brain and that helped improve some of
his neurologic symptoms. He then went through another round of chemotherapy.
The chemotherapy really kind of slowed him down. He didn't have a lot of nausea
and vomiting; he just was fatigued. That was his major complaint.
He was a really active guy; he was a bicyclist and I mean like Lance
Armstrong-type bicyclist. Despite the second round of chemo the cancer wasn't
regressing at all and he was having side effects from the treatment.
When he asked his oncologist what treatment was next, he was told, “Why don't
you go ahead and do the trip to
about some more chemo. In doctor-speak that means chemo's not going to work
anymore. But his doctor never really told him chemo wouldn't work anymore, and
he actually never told him he was dying from his cancer. Oftentimes, doctors
don’t want to take away hope.
Barely a week later, he developed a blood clot in his leg and a piece of
it broke off and went to his lung, making him very short of breath. He was
hospitalized, and given the way the healthcare system is now, he was cared for
by a new doctor called a hospitalist. That’s a doctor that takes care of
patients only in the hospital. The hospitalist was dealing with the acute
issued but never helped him understand the big picture. By the time they were
getting ready to discharge him, nobody had ever talked to him about the fact
that he was going to die, probably very soon, definitely in probably less than
My friend was a smart guy, and he had been on the Internet. He knew that
his cancer had already spread, and in the back of his mind, he already knew that
he was incurable.
Given his response to chemo and his side effects, he actually asked if it
was the right time for hospice. He opted to go on hospice and he decided not to
get any more chemotherapy. He dedicated himself to doing things he felt he
needed to do. He wanted to optimize his function and quality of life.
He was a religious man. He kept going to church every Sunday. He made
videotapes for his daughter, who had now been born, about what was meaningful to
him and what he hoped for her. He made cards for all her birthdays, high school
graduation, and for her wedding day. He spent time making sure his wife was
going to be taken care of financially and making sure she knew that he wanted
her to go on with her life after he was gone.
His major short-term goal was that he really wanted to make it to
Christmas, interacting with his family with his symptoms managed. With the
support of the whole hospice team, he did make it to Christmas and he was able
to say it actually was the best Christmas he'd ever had.
Fortunately, with good medications, he wasn't in pain, and he wasn't short
of breath. He was really having good quality of life. He was up and around.
He was holding his baby, and he was able to say this was the best Christmas
ever. Nine days later, he was dead. But in my mind, and I think in his mind
and his wife's mind, and his whole family's mind, he really did have a good life
and good death. He died with his definition of peace, and that's ultimately the
hope and promise of hospice.
We have talked a little bit about medications that helped him not have
pain and shortness of breath. Patients often have a big concern that they may
experience horrible physical suffering when approaching death from their
disease? The good news is we have lots and lots of knowledge and tricks up our
sleeves to control physical suffering. Pain is one of the most common concerns.
People fear that they're just going to have horrible out-of-control pain as they
approach death. Fortunately, the truth is that's not the case. We have
medicines that almost always -- I can't guarantee always -- but almost always
One of the major types of medicines for pain are the opiates -- that's
morphine and its relations. There's a lot of stigma attached to morphine. I
treated a gentleman who had advanced emphysema. It turns out opium is not only
for pain, they’re actually very good for shortness of breath. I recommended we
give him some morphine to help take away his sense of shortness of breath.
And he said, "Oh, no. Is it that time?" He thought that meant that he
was going to die shortly because we were going to start morphine. There's this
unfortunate image that when you get referred to hospice, life is over. That’s
definitely not the case. Hospice really focuses on optimizing the quality of
life each day. We talked him into trying the morphine, and he felt much better.
He was able to resume eating, drinking, talking, walking and enjoying life.
Morphine made a huge difference in his life. Morphine didn’t mean death was
close or that we were trying to hasten his death. That's not part of hospice
philosophy at all. The morphine enhanced his life.
There’s also a fear that opioids like morphine are addictive. Fortunately
they are not addictive when we use opioids to treat symptoms, whether it's pain
or shortness of breath. When used for symptoms, statistics show that addiction
is astonishingly rare. The numbers are like 1 in 10,000, and I have never seen
it. This doesn't mean people won't get physically dependent on the opioids
which is something completely different.
Physical dependence is if you stop the medication, you go into withdrawal.
That does happen with morphine when you've been on it for a while. But it also
happens with beta blockers that are medicines we use for blood pressure. If you
stop it cold turkey, your blood pressure goes sky high. That's withdrawal.
Does that mean that the person was addicted to their blood pressure medicine?
Not at all.
Addiction is when you psychologically crave something to the point that
you're going to do harm to yourself or somebody else to get it. For all
practical purposes, it doesn’t happen when you take opioids for bad symptoms.
Morphine isn't the only pain medicine. In fact, it's not the best pain medicine
for certain types of pain, especially a type of pain we call nerve pain. We
have a lot of other types of pain medicine. So again, the bottom-line message
is we can control pain and other symptoms very, very well.
But part of hospice philosophy is that pain and physical symptoms aren’t
the only type of suffering. We pay a lot of attention to the patient as a whole
person and their family unit to try to understand what their sources of their
suffering might be and, again, how we can help them have a better day.
I’ll give you a couple of examples. One, we had this gentleman who was
admitted because he was throwing up. Well, we threw an antinausea medicine at
him and we thought we got his nausea better. But he threw up again. We went up
on the dose. Then, we actually added another medicine to try to control his
nausea. But he still threw up every once in a while.
We were just scratching our heads. Medically should we add more medicine?
You know, sometimes we need three or four medicines to really control bad nausea
and vomiting. But it took a really smart nurse on our team to observe that this
patient was throwing up during or soon after a priest’s visit. It turned out
this gentleman had been raised Catholic, but wasn't a practicing Catholic
anymore. He had a wife, but before he got married, he had an affair and he had
a child with another woman. His wife knew this woman and knew the child.
So this gentleman now who was facing death apparently felt guilty. And he
wasn't even aware of it until the nurse asked him, "You know, have you noticed
that you seem to get nauseous after the priest's visit?" And he said, "Oh, you
know what? That's true." And then it just spilled out that he had been
experiencing guilt. As soon as that happened, he wasn't nauseous anymore. In
fact, we stopped all the antinausea medicine.
There was another gentleman who came in with chest pain. He had a lung
cancer that was unfortunately eating into his chest wall and it was causing a
bad nerve pain. We had a good pain regimen for him and his pain improved. But
despite this, he made the statement: "I've had this pain here even before I got
the cancer. And it's never going to go away." It turns out he was a Navy SEAL
and he had had shrapnel wounds. We thought his chest pain from that even before
the cancer came. As we got to know him a little bit more, it turns out that he
had had to do things when he was a Navy SEAL that he had a really hard time
dealing with. This man had this pain for 20 years in his chest. Once he
started talking about these issues, together with good pain medicines for his
real physical pain, one day he said, "You know what? My pain is gone." So
again, paying attention to the whole person is really important. Care of
the whole person is what hospice care is all about.
What happens if there's something that we call refractory physical
suffering. Although almost all the time we can control pain, unfortunately,
rarely, there are some pains that we really can't control. In those cases, what
can we do? Refractory means we tried everything known to man to try to control
it. In those circumstances, it's reassuring for patients and their families to
hear what we do practically in those rare cases.
With the patient’s and family’s permission, we use a process called
controlled sedation for refractory physical suffering. An ethical principle
called the Principle of Double Effect is the basis for this practice. It came
out of the Catholic Church. It's the idea that if the primary intent of doing
something is to relieve suffering and promote quality, then even if, as a
secondary unintended consequence you hasten death, that's legal and ethical.
So practically, what does this mean? Let me give you an example. We had
a young 22-year-old man who had lymphoma that was chemo resistant.
Unfortunately, the lymphoma was all up and down his whole spinal column,
everywhere. We did everything known to man - oral medicine, intravenous
medicine, putting medicine directly into the fluid around the spinal cord.
Unfortunately, he was just in horrible pain.
After discussing options, he said, “I would like you to make me chemically
comatose to the point where I know I won't wake up anymore. I understand I will
pass away either from the disease or because I've been not eating or drinking.”
We used chemicals to basically make him sleep so deeply he no longer
experienced pain. He died two days later. This was too soon for him to have
actually died from dehydration, in my best medical opinion. It's possible that
if he lived longer, he might have passed away from dehydration, again, without
any suffering. But if he had died that way, it may have been that we hastened
the death, but the primary goal was to relieve suffering. That would be an
example of the Principle of Double Effect, which again is legal and ethical.
This process of what we call controlled sedation for refractory physical
suffering really isn't euthanasia or physician-assisted suicide. Euthanasia is
when the doctor does something directly to cause death. And physician-assisted
suicide is when a physician prescribes a lethal dose of a medication that a
patient takes themselves. So it isn't either of those.
The reason I'm bringing this up is because oftentimes it's empowering to
people to know first of all, that we can control almost all physical suffering
almost all of the time. But in the rare event where there is tremendous
physical suffering that we can’t control, we're not going to leave someone
suffering. And there is this option that's legal and ethical in all 50 states.
Now, I want to turn briefly to the concept of bereavement. Bereavement is
when people feel grief that's a response to loss. Patients and families can
have multiple losses all through this process. There’s the loss of health, of
functional status, and of a loved one’s presence.
That's a lot of loss to deal with. It really is crucial to deal with this
grief, not only through the disease process, but even after the patient passes
away. Hospice’s team is there throughout the disease and even after a patient’s
death to offer support.
I'll come back to my friend who passed away. His wife is now a single
mom. They're coming up on the one-year anniversary of his death and she's
already starting to show signs of grief again. She had gone back to work and
started living life again. But now as it's getting close to that one-year
anniversary, all hell's breaking loose again. The Medicare Hospice benefit
actually dictates that there be 12 months of bereavement.
The hospice that I work for actually gives 18 months of bereavement
support for loved ones because we recognize that at the one year anniversary,
all those emotions come back again. It's often comforting for patients to know
while they're still alive that there's going to be this support for their family
and loved ones once they're gone. I can see, unfortunately, that my friend is
really going to need this support because she's in a difficult situation as a
single mom and because all those emotions are coming back up again.
Grief is normal for everybody. But sometimes there's complicated grief,
where either the grief is more prolonged than normal or deeper than normal, and
may cross over into depression. The hospice bereavement team is highly trained
at identifying normal grief and complicated grief and who may need additional
My friend’s wife actually has had an hour meeting with a bereavement
counselor every week, since her husband passed away. There is group support as
well as individual one-on-one therapy.
In summary, I would like to emphasize several key points. Hospice really
does try to come to patients and families when death is approaching and honor
their values and goals. It really tries to partner with patients and families
to make decisions that help optimize quality of life and help them have the best
day possible. But if death is coming, to make sure that it's peaceful,
comfortable, and dignified. The overriding goal is always to help people find
their own self-determined peace, however they define it.
I hope I've given you a feel for that. I'll take any questions now. I do
thank you for your attention.
Is your program sustainable based on only Medicare dedicated rates
Yes. Well, let me put it this way. There are different kinds
of hospice philosophies. We're a fairly large hospice and we do a lot of
palliative care that costs a huge amount. But we'll do it because it's
the best thing and it's the right thing. Small hospices sometimes can't
do that because if they did for a few patients, they would go out of
business and couldn't help anybody.
Where I work, we have a very active fund raising foundation
that helps us make ends meet.
Please explain that when a hospice patient suffers an illness
or injury not related to the diagnosis for which they were in hospice for,
they will get treated; that is, hospice for cancer; they fall and break
My friend actually had a metastasis of his cancer to the bones
Sometimes somebody will fall and break their leg and it is related to the
cancer. In that case, the hospice will pay for all the surgery and care
related to the fracture. Sometimes somebody falls and they're just
and they get a fracture and it had nothing to do with the cancer diagnosis
or whatever hospice diagnosis they have. Hospice doesn't limit your
medical care in any way. Medicare or whatever insurance you have will pay
that just as it always would. There is no difference because you're on
hospice, none at all.
Will hospice provide a psychologist instead of a chaplain?
We do get psychology consultations. Whether it would be a long
term psychotherapy type thing, I think that would have to be
individualized. At my institution, we almost never say no to anything.
So we'll always try to figure out a creative way to do something if we
think it's the right thing to do. But it's not designed for long term
psychotherapy per se.
How do you know a person in a coma does not experience pain?
That's actually a very good philosophical question, and the
bottom line is nobody can tell you the answer. But the reason that I
think there is no suffering is based on what we know about surgery. They
During surgery people are in chemically-induced comas. If you then ask
people when they wake up from their surgery, if they experienced
suffering, they'll all say no. Whether they experienced it and can't
remember it, no one can answer that question.
But to the best of our ability to understand what the brain
is experiencing, the answer to that is no. But I don't think anybody can
prove that statement. But I think it's a reasonable and highly probable
If you go off hospice because your condition has improved, can
you go back on hospice when your condition worsens?
The answer definitely is yes. In fact, for some chronic diseases,
like congestive heart failure, we've had people who seemed to have
improved, and we discharged them from hospice. Then maybe they died
a week later. Because with congestive heart failure, again, things can
happen suddenly. So when people improve, we rejoice. That's our bottom
line. We're there to help people have a better day. Unfortunately, we
wouldn't be surprised if they passed away in the next six months, we just
keep them on hospice. But if someone wanted to be off hospice, there's no
penalty to ever come back on hospice.
How do you get a hospice organization to “act” without waiting for
I think it's varies by institution. Smaller hospices can't afford
necessarily to take a patient when they know they're not going to get
reimbursed. Other hospices will take people hoping that they're going
to get reimbursed. Others are able to provide free care because of
Your hospice sounds great. Can you describe a bad hospice?
I wouldn't say they're bad; I think there's really just
limitations. They just don't have the resources to provide the care that
we can as a larger hospice with an active fund raising group. I can't say
they're bad, we just have different limitations. Personally, I think all
I think an example in terms of my personal experience, a bad hospice
might be one that -- or at least that we would report on one that allows
the patient to get out of a routine over a holiday period. And I've seen
Can a chemically induced coma to control refractory pain be used if
you signed the “no machines” power of care?
They're two separate issues. There are things that are artificial
means to sustain the body. A machine that has a tube into your lungs that
breathes for you is considered artificial. It's something that you're not
naturally able to do yourself and that it's sustaining your body. That's
fine if it is sustaining quality of life. But if it's not, then I would
say not to use that.
When someone's in a chemically-induced coma, they're still
breathing; their heart's beating on its own. There's no need for anything
artificial. At some point, their disease or something like dehydration
may take its effect and someone would pass away. But there is no
artificial means to support them.
So if someone has a living will or durable power of attorney that
says they don't want resuscitation or extraordinary measures to keep their
body living, there's no incompatibility in a chemically-induced coma that
they voluntarily go into.
Are there services available for someone not eligible for hospice
like educational materials, et cetera?
Again, that varies across the country, but partly you can just
contact any hospice and they'll give you whatever information they have.
There are people who have symptoms like pain who are not dying. In my
community, we're known as pain specialists, so we'll have people who get
referred to us to help better treat their pain. So you can always ask
the hospice to see if they have any resources that can help you.
There's also this concept of palliative care that's burgeoning
across the country. There's actually talk of an official board-certified
palliative care specialty very shortly. When you're in the hospital or an
outpatient, you could request a palliative care consultation. A
palliative care specialist is an expert in terms of treating symptoms like
There's also a lot of information on the Internet. My email
address is firstname.lastname@example.org. If there's anything I can ever help
with, I'm happy to.