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

The Role of Hospice in Carcinoid Patients


      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


very advanced. 


      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


calls self-actualization. 


      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


interdisciplinary team. 


      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


their family. 


      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


cure it.


      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


your goals.


      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.

      He lived in Montana; he was planning on going there for Thanksgiving. 


When he asked his oncologist what treatment was next, he was told, “Why don't


you go ahead and do the trip to Montana and then when you come back, we'll talk


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


six months.


      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


control pain. 


      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


      for hospice?




            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


      their leg.




            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


      medical fact.




             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


      insurance approval?




            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


      health care in the United States needs to be reorganized.


      DR. ANTHONY:


            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


      that happen. 




            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  If there's anything I can ever help


      with, I'm happy to.