Alzheimer Care Resources

Mary Lou Hathaway, RN, BSN has been in the practice of hospice nursing off and on for seven years.

Cliff Davis, D. Min., is a Community Education Specialist. He has a doctoral degree from seminary. His background is as a hospice chaplain, but also a bereavement specialist and coordinator for hospice. He has worked in hospice for eleven years, but has done pastoral care and care for the dying for twenty-four years.

MHG: One of the things I believe – our clients have taught us this – is there are a lot of people who still do not know about hospice, do not know about its availability, do not know what it does or doesn’t do, do not know if they can afford it. So what we would like to do is invite either of you to begin by telling us what the whole concept of hospice is.

CD: A lot of people do not have the information that they need, and become very frightened when they think in terms of hospice, and they connect the word “hospice” with the word “dying.” This is very unfortunate. In our society there is a strong connection between the two. That’s really not what hospice is about. We do care for people who are terminally ill” for the last six months of their prognosis, but even that – now in the legislature, they’re really taking a look at that. In particular, with these kind of patients, that’s difficult to know if it’s six months away, so they are looking at that particular piece again.

CD: That’s right. It’s the dying piece that has probably gotten the most publicity. We do care for people who are in the last part of their life, but it’s not just about the dying process. Hospice is all about, and was based on the idea, that everyone should have the opportunity to live as fully as possible until the last moment they are here. That’s a direct quote from Dame Cicely Saunders, who is the founder of hospice. It actually began in the early 1900s, but in particular, in 1960.

MHG: So hospice is about living fully, pain free, cared for, and loved until the very end of your life.

CD: Absolutely. And there have been many people who have said it’s one of the most important times of their lives. They’ve been able to say the things they needed to say, their relationships have really been healed, so they’ve been able to really find the meaning of why they’ve been here, if they’ve had the opportunity to do that. The tragedy is when that’s stolen from them, when they don’t have the chance to really have the time and the control to live this part of their life the way they choose.

MGH: That brings up a question, Cliff, and Mary Lou, you might speak to that as a nurse who has no doubt spent some time at some point in your career in hospitals. That brings up the question of why hospice, considering what it offers an individual and their families, is not brought up more often as one of the options for terminally ill people. For example, I spoke with a woman recently who said that she didn’t know that her husband with Alzheimer’s would be eligible for hospice. She thought hospice was for people who were dying of cancer for example, or some physical disease of that nature, and that, in fact, although her husband is in the very late stages where he’s beginning to have problems with motor skills and even swallowing, the concept of hospice has not been mentioned to her by either her physician or a social worker at the hospital.

MLH: Certainly there’s a lack of education that hospice has been struggling with from the very beginning back in 1980, and the role that Cliff is playing as the Education Coordinator is a major role that was developed early on in the hospice movement, simply to inform the community and the helping community about the availability of these options. I don’t know that even to this day, after 20 years of this kind of educational effort, that the general information is out there. So unless a person has had an experience with hospice through a neighbor or friend or someone in their church, they frequently don’t think about it as an option. Physicians frequently are so concentrated on managing symptoms of long-term diseases that they fail to identify at what point the treatment is losing its effectiveness or the patient’s condition is deteriorating to the point that they’re not going to be able to maintain them indefinitely.

MHG: These are men and women who have taken the Hippocratic Oath to save life, so their focus continues today, not without exception obviously, but in general, to be one of “let’s use all the modern developments in medicine and technology that are available to us to save life,” and what we’re talking about here is “life at any cost?” and even “questionable quality of life?”

MLH: The medical model works quite well for very acute onsets of illness and for very traumatic situations injuries, things like that.

MHG: Meaning situations that will resolve?

MLH: Yes, we do well with those. We do well with an acute heart attack. We do well with automobile accidents and things like that. We can salvage and put people back together and have them live pretty normally, with very little residual damage. But what we haven’t faced up to is the chronic diseases that have years and years of effect on the body and finally do weaken the body to the point that the person can’t survive any longer. Recognizing the stages that people are going through and at what point they are reaching an end stage of the disease process is not well identified in the medical community. Each time the person comes back for treatment or asks for treatment or shows up with more symptoms, the attempt is to prolong life and not always measure what the quality of that life will be. We have policies in our institutions that support that. We have an unwritten law that any person who ceases breathing or their heart stops beating will be resuscitated, regardless of what we’re bringing them back to. Our whole system is designed around saving, prolonging, extending life, and not recognizing that there are certain states of illness that are so devastating that life cannot be prolonged with any quality. That’s basically what hospice and the national hospice organization have been about in the last few year – trying to identify how you know when a person is beginning to cross over into a terminal phase, or an end phase.

MHG: Because nobody blows a whistle and says, “Okay, we’ve reached a point where aggressive medical treatment should stop and we should bring in the whole hospice team. Let’s talk a little bit about the fact that we know persons who are diagnosed with progressive neurological diseases. In this case, we’re talking about Alzheimer’s Disease. Let’s break that down. It’s a disease of the nervous system which progresses, usually over a long period of time. It can be two to twenty years. I think the average is about ten years, but if it’s early onset, which means that you were diagnosed with it under the age of 50 or 60, then the progression is much more rapid. Let’s talk about that as a long-term chronic disease which ends in death, and let’s talk about the person with Alzheimer’s and at what point hospice begins to be a viable alternative, or at what point the loved one and the family should be looking at hospice.

CD: The shift, for us, is from curing to caring. All the support that hospice offers, not just to the patient, but to the whole family as well. At hospice, the patient and family are the unit of care. We offer support to anyone that wants it during the course of the illness, but also for the family members after the family’s death – at least 13 months. A lot of emotional support and grief support and things like that occur. Even when someone is appropriate for hospice, at that point you’re really looking at what the values are. For us, seeing the fact that someone cannot be cured does not mean failure by anyone – for the patient, family or physician – but some physicians or other medical practitioners are very much involved in the acute medical model, which is “cure and cure and cure and keep trying to cure.”

MHG: And “cure” is the only “success.”

CD: So you’re continuing to try to cure, even up to the moment that they actually die. We’re saying, “Wait a minute! There is that point in time when curing may not be possible, but it does not mean that the medical system has failed or stops.” There is are a tremendous amount of things that can still be done medically and emotionally, physically, socially, spiritually, for that person to have an incredible life until the last moment they are here.

MHG: Let’s talk about two things that will be very important to the family of a person who has Alzheimer’s or just the spouse or just the child, because often it’s a singular situation with only one family member. Sometimes there’s no one, but usually, a family or several persons are involved. That is number one. The National Alzheimer’s Association tells us that 7 out of 10 Alzheimer’s patients are cared for and die in their homes. Let’s talk about how those people who are not institutionalized, but are obviously being treated sometimes with medication which at some point fail, and we get into later stages where we’re dealing with incontinence, both bowel and bladder, a lot of personality and mood changes, exhausted care givers who are unable to get a decent amount of sleep because the person with Alzheimer’s tends to wander at night. When does that person ask for help for hospice and how do they know to ask for hospice help?

MLH: Because hospice currently has this understanding that a patient has to be within 6 months of death in order to qualify for the special Medicare hospice benefit that is available, that 6 month clause hampers the decision as to when an Alzheimer’s patient or a dementia patient really needs the help. Frequently, the help is actually needed before that time. What they have tried to do within the hospice movement is define what a person is like when they are within approximately 6 months of death and have the diagnosis of Alzheimer’s. Some of the very specific things we look for when we are trying to make that determination are speech abilities – generally we look for the loss of language, perhaps down to maybe one word a day that repeated and repeated, but no longer does the patient have the ability to use several words.

MHG: Not able to smile? Why is that a criteria?

MLH: It’s a stage and an indicator of the person’s progression downhill. I don’t know the association, but generally, we find that as people get more and more withdrawn, they are less able to respond to their external stimuli. They will still, of course, respond to pain, but not in the same facial expressions. They are unable to hold their head up independently, and frequently we see significant problems with swallowing. A patient who has difficulty swallowing often gets into problems with things like aspiration pneumonia, where they inhale some food into their lungs and get pneumonia, or they have problems with urinary tract infections and so frequently we see those two problems. They may also have a catheter, due to incontinence or something going on in that direction. One of the critical points for any family is when this difficulty swallowing occurs. They must then decide whether a feeding tube is appropriate or not. It’s undoubtedly one of the most difficult decisions that anyone has to make, because basically, the condition of the patient is not that different. It’s just that being able to swallow their food without choking on it is becoming increasingly difficult. It doesn’t necessarily mean that they don’t try to eat or don’t appear to enjoy food. With a cancer patient, it’s different. They generally are rejecting food because it doesn’t taste good to them and they don’t want to eat, and their losing weight. But that’s not always true of an Alzheimer’s patient.

MHG: That’s helpful, because we said earlier that it’s hard to draw lines for people about when to stop aggressive care. You’re suggesting that certainly, one possible line is the one where the person is beginning to have difficulty swallowing.

MLH: Yes. Do you at that point introduce a feeding tube, which is what most nursing homes or physicians would suggest?

MHG: There were criteria in earlier years, and I know things have become more difficult in terms of funding for Medicare, and this may be too early a criteria, but what about the point at which the person’s being cared for at home and develops urinary and bowel incontinence and begins to develop bed sores or ulcers?

MLH: Certainly, home health advice and visits can be helpful to help set up a program to try to avoid further deterioration of the skin and to help the family decide what to do about the incontinence problem and whether to use catheters or diapers or that kind of thing. But a home health consultation is an intermittent short-term visit. It’s not a visit from a nurse who’s going to stay in the home for any long period of time. Private duty nursing care is extremely expensive and not covered by Medicare. Any kind of home health aid or a sitter is usually not covered at all by Medicare. That’s probably one of the most difficult times for the family and the time when the least help is available. Once the patient becomes immobilized, loses speech, etc., hospice then can be considered appropriate. There’s that awful period in between when you can’t get very much in the way of home health service and there isn’t available funds for private duty. Medicaid, I believe, does cover some assistance for sitters in the home and that kind of thing.

MHG: Medicaid will cover some, but there are financial qualifications, unlike there are for Medicare, so that’s an entirely separate issue which we won’t complicate this discussion with. I am interested, though, because I have in front of me the guidelines for hospice care for an Alzheimer’s patient as of two years ago, and apparently those have changed. Two years ago, it was the inability to ambulate without assistance, to dress or bathe properly, urinary and fecal incontinence that was frequent or constant, the inability to speak or communicate meaningfully, and you were allowed half a dozen words, not just one. Also, if you had other illnesses going on at the same time, like bed sores, pressure ulcers that caused infection and so forth, all of that together would qualify a person. It sounds like now you’re saying that person would go to a hospital if needed, return home and be treated by Medicare, and that we have waited until the later stages, which is appropriate, because hospice has been defined as the later stages…

MLH: One of the issues that would make a difference, certainly, would be things like aspiration pneumonia or kidney infections that are frequent, because those alone will help speed up the process of dying, certainly. If a person is having these secondary problems that are a result of the difficulty swallowing and fluid intake and that sort of thing, then certainly that’s going to shorten their life span. The issue gets to be, are you going to treat those secondary infections very aggressively? For instance if they get into serious pneumonia and need a ventilator, are you going to progress to that? Or are you going to treat the pneumonia with an antibiotic and hope that it gets better and stop at that point? There are different levels of what we call “palliative” or “comfort” care, and certainly if the infection is causing discomfort, we would consider treating that with an antibiotic as long as it would prolong a good stage of life, but to progress on to a ventilator is beyond the scope, generally, of “comfort” care.

MHG: I think you brought up something extremely important that I want to stress here, and that is that a lot of individuals who know a little bit about hospice and believe it is for the care of a dying patient, believe that it also means the patient is no longer being cared for. They know they’re being kept clean and comfortable, but there’s a misconception that if antibiotics help heal sores which are causing pain, then they can be used, even though you’re in a hospice situation, and that pain medication is given, and in fact probably given much more generously, than in the acute medical setting because we do not want persons dying in pain if we can help it.

CD: The goal at that point is for that patient and that family to have the absolute best day they can today. We’re going to be very aggressive, actually, about pain management and symptom control.

MHG: Let me stop you and say that I am the wife or the daughter or the son or the spouse, the husband of a loved one who has Alzheimer’s and that person is no longer able to utter more than one intelligible word a day, hold their head up. They’re probably bedfast, and they qualify for hospice and I know this. I call you. What happens?

CD: Before we directly answer that question, let me put a side note in here. The average length of stay in hospice is between 20 and 40 days, and at around 30 days, where you may have a 6 month benefit period, most people don’t actually get into hospice or be referred to us until the last 30 days or so. People, for the most part, wait too long to even start talking about what we’re talking about right now. It is never too early to think about hospice, to get information about hospice. You’re not signing up immediately. You’re just getting as much information as you can, so that when the timing is right, the support is ready to go. We work as a whole interdisciplinary team, exactly for that patient and for you, as a family. We offer a number of different kinds of support. When the referral is made and the patient is admitted to hospice, at that moment, we will stay with them, really giving them relief that they are in desperate need of.

MHG: Can you tell me, then, when you come to my house, and it’s my husband, and it’s just the two of us, and you come and you’re going to take care of Harry. Help me! I’ve pretty much done what I can do, and I don’t know how to handle this part now. Mary Lou, you’re a nurse, are you going to come? Are you going to come, Cliff? What’s going to happen? Who’s going to talk to whom? Who’s going to do what? How long will you stay?

CD: These are excellent questions.

MLH: Those are very important questions, and another area that’s frequently misunderstood, and so it’s important to clarify that. Basically, hospice care is designed to teach and educate family members. If we were to receive a call from a family member, neighbor, social worker, friend, to please come out and talk with the family about hospice, one of the first things that we do is call the physician to make sure that they are indeed in agreement with this recommendation or suggestion that the patient become a hospice patient. The reason we do that is that we need the support of the physician in helping to order adequate medication – whether that be pain medication or medication for confusion or breathing difficulties or anything like that. We need to be working with the primary physician who is caring for the patient at that time. So we do ask, not only for his agreement to follow the patient, to be willing to sign the death certificate if the death should occur at home, so that there does not have to be a lot of calling of 911 and doctors having to go out and declare the person dead, etc. We also ask the physician to sign a certificate that says this patient is within 6 months of death, in his best judgment. That allows the insurance company to kick in at a different level, and we’ll talk about reimbursement later.

At that point, a nurse and a social worker, or a nurse or a social worker – a team or one person – would come out to the home and sit down and talk with the patient, the family members, whoever is appropriate to be in on that interview, to determine what the needs are, and to specifically seek the goals of the family. What are the things that they see that are necessary to provide comfort and as much quality of life as possible during this difficult time?

We are a multidisciplinary organization and we serve not only the patient but also the family, and that family may consist of neighbors rather than blood relatives, and that’s fine. We deal with significant others rather than husbands and wives sometimes. We’re very open in our identification of what family, but basically, it’s the group of people that take on the job of supporting that person in their illness. We consider that group to be the people we are most concerned about. Frequently, with an Alzheimer’s patient, because direct communication is so difficult, we spend more time providing support and helping to advise and teach family members than we would provide directly to the patient. With a cancer patient who is lucid, that might be different, but with most of our Alzheimer’s patients, by the time we get them, they are not actively participating in decisions regarding their care. We have to help families to make those decisions, which can be quite difficult, and they might need a lot of support and direction.

MHG: If I hear you correctly, you do not come and stay to take care, physically, of the person with Alzheimer’s, although you come periodically and visit the patient and check up on things, or when the family calls? You are doing a lot of work with the family. When I say “the family,” it may be the spouse of a heterosexual marriage, it may be the loved one, the significant other of a gay or lesbian partner, it may be grandchildren who have been caring for grandparents, and it may be, as in some of the cases that we have seen, people who have no immediate family, and it may be neighbors and friends. We’ll call that group “the family.” It sounds like hospice helps the family help the loved one to live life until the moment of death, but that your effort is really going primarily, once the basic physical medical needs like comfort and pain relief are done, that you’re dealing with issues like grief or the family who has to deal with impending death and the feelings surrounding that. Can you talk about that?

CD: We have several priorities happening at the same time. It is always a priority for the patient to be well cared for. So once those things are taken care of, we’re always watching those things. We want the very best quality of life for that person in their own home, if that’s where they are, or wherever they happen to be. We’re always assessing the physical needs. That is one of the mainstays for the nursing piece in particular. Always educating about the changes that are going on.

MHG: Would you, on an initial visit, for example, set up a plan of care, at least initially, for how often you come back?

CD: That begins the moment hospice begins. That plan of care is very, very significant to us, because it is tailor made for each and every patient and family. This really depends on what you need us to do to help you, and that help is only a phone call away. There’s always someone on call. That, for many people, is the great relief, that they’re not alone in this. You cannot do this alone and still be healthy. It will devastate the care givers.

MHG: You mean in the middle of the night if I wake up and am overwhelmed with grief and fear, that even on a holiday, that somebody is available for me to call? Any family member, in addition to the change in the physical condition of the patient?

CD: Absolutely. The crisis happens. That’s exactly what hospice is there for. Even for some of the nursing visits, it’s not uncommon at all for the nursing visit to be an hour to two hours long because the task part is the very first part only. Then the nurse, social worker, the hospice chaplain, a hospice volunteer, a hospice home health aid, will actually sit and visit and really talk with whoever happens to be there, depending on what they need, to give them support as well. This is a very isolating kind of illness, and they really need that kind of support. All of us are very specially trained in listening skills and all the ways to support someone, not only the one who’s dying. We continue to interact with the patient. They are never forgotten in the midst of this. We offer spiritual prayer to the patient, to the family. If they have their own minister, we’re going to respect that person that’s going to be their primary spiritual care giver. However, in some situations, families don’t always get what they need spiritually from that person. Hospice chaplains are there, not to commit or judge – we have no agenda whatsoever to make anybody do anything. We use a word like “journey” we literally want to walk with that patient and their family all the way through this, with them in charge. They are literally telling us what it is that they need. To the best of our ability, that’s going to be the priority every single time.

MHG: Does that change as things go on?

MHG: Tell me a brief story about a case you’ve done where it started out one way and changed a little bit or a lot.

CD: A lot of times, when hospice first comes in, they don’t know what to expect. So they may agree to the nursing visits and are immediately surprised by how involved the nurse becomes – really looking over the physical symptoms. We need to change this pain medication to something else. It he getting relief from whatever has been done? Well, Let’s make this change. They are amazed at the tremendous advocacy that happens with their own physician between the hospice nurse as an ally to the family, to the patient. But they may not really understand about the other team members that begin to come in, and they may not really be aware of how stressful it is on themselves, or that what we’re going to highly encourage them to do is to take care of themselves. At first they may think they don’t really need a volunteer, but these volunteers are trained to sit with somebody like this, to give the care giver a break. They have been so involved in this so long they don’t realize they need a break! It’s the normal routine to be this stressed out, which is really unhealthy.

MHG: Well, we’ve seen a number of care givers hospitalized and both persons sent to a nursing home, because the care giver became so ill. This is usually in the case of an elderly couple, whether a traditional or non-traditional couple, that the one taking care of the one who is supposed to be ill becomes ill also. You’re telling me that where this is not available through the hospital, and is sometimes, but not always, available through local Alzheimer’s local chapters – respite care where they will pay for someone to come and sit a while and give the care giver a break. Hospice has volunteers who will do this and they’ll do it on a regular basis?

CD: Yes. It can be set up on a weekly basis for someone to come in for a few hours. Many times the care givers will go out and get their hair cut – it may be the only time they can go to the grocery store or to run their errands. Some of them simply need to sleep. They need somebody there to make sure the patient stays okay. That’s exactly the role of a hospice volunteer – for respite care.

MHG: So you have a range of services that you will give, but it’s the family who picks and chooses from the menu.

CD: Yes. The nursing, of course, is the core of hospice care. If they have their own minister, they may not need the chaplain. The social worker is going to be pretty involved as well, not because we want that person moved to another location. The social worker, and all the way through the whole team is there literally to listen to the family members, their grief experience, how they’re actually doing. That’s what we want to know between every visit, is how YOU are doing right now, and how we can help.

MLH: The social workers also are familiar with all kinds of resources in the community that some families are not aware of, so they are constantly looking for other support mechanisms or financial assistance or clothing needs. Sometimes we’ll have a family who is so destitute that we need people to donate items for that family or donate food or things like that. We see some pretty desperate situations. It’s pretty easy to tap into that in the hospice network, because people volunteer because they want to help out. There’s a lot of ways people do that. Sitting with patients and providing an opportunity for the care giver to get out of the house or rest is a very important part of hospice services.

MHG: Another thing that strikes me is that it is very hard for a care giver to deal with their own grief if they’re busy doing caring tasks. I know myself, and most of us know of situations where we go through a very, very difficult time, and then we fall apart, as the expression goes.

CD: Absolutely. Most people have such a tendency of not asking for help or being uncomfortable about receiving help. That’s exactly what we want to do and feel very called to do. It’s not that it’s just a job, we are that committed to caring for a very special group of people. Part of the hospice philosophy is very clearly to give back to these people the dignity they deserve. This is not just about an illness. That is Harry in the other room. And that’s who we’re going to care for, so that Harry has all the dignity he deserves, all the way until the last moment he’s here, but also that you, as Harry’s wife, have the support you need, even after the death, so that you can find your life again when this part of your journey together is over. That’s what we want to honor, every single visit we make.

MHG: So my life goes on, and Harry’s life, which was always sacred, comes full circle.

MLH: Actually, yes. The way we generally know that that’s the case is that, as we’re helping with baths or turning, we watch very closely the facial movements. Any expression of frowning or moaning or resistance and sometimes we can even narrow the area down to a wrist that is terribly contracted or an area that is uncomfortable from laying in bed. We work a lot on watching for any sign of pain that might be there.

MGH: What kinds of medications are used currently for an Alzheimer’s patient that you sense has pain and you call the physician?

MLH: We try to clearly identify, as much as possible, the source of the pain, and if the pain is an inflammatory kind of pain from joints or from soft tissue, then we would begin with things like aspirin or Tylenol or appropriate medications that help with inflammation. If the pain is a much deeper problem, such as neuropathic pain or somatic pain, visceral pain, internal deep pain, then we certainly have to go to stronger medications.

MGH: Can you tell, for the lay person, how you would know about those kinds of pain?

MLH: Basically, neuropathic pain follows certain pathways of nerves and is usually caused by some sort of pressure or damage to a nerve that could in some ways be a result of contractures and drawing up of muscles and tightening up of muscles and that kind of thing.

MGH: You may also have a person where it may not be caused by Alzheimer’s Disease, but who is older, and is lying in bed with compressed discs or compression fractures from aging and having terrible back pain and nerve pain and muscle pain and no one treating it.

MLH: Yes. A variety of types of pain can occur. There are certain medications that are much more helpful with neuropathic pain, and don’t necessarily involve narcotics, but other types of effective pain medication for those situations. It’s a difficult situation of analyzing, putting together all the clues that you can, putting together the patient’s physical history with the family, and doing a lot of “what-iffing” and detective work, but discussing that with the physician to see if you can come up with mechanisms that work for that patient. Sometimes you have to do some trial and error, but generally you start with the least difficult medications or the least addicting medications and you work up from there. Certainly when a patient’s life is limited, we have more options available, more comfortably, within the medical community, to use pain medication. Not to ignore the problems of tolerance developing to the medication, we work with that constantly. But basically, what we know is that if a person is in pain and receiving pain medication, the problems of addiction are almost non-existent. So it’s very important to continue to treat the pain and allow the person to be as comfortable as possible, and not to consider that, just because they are unable to communicate with us, that they are not experiencing pain. That would be a terrible disservice to be trapped inside your body and be in pain and not have someone attempt to help.

MHG: I’m going to put you on the spot and ask you a question as a nurse, because I know this occurs. I know that there are physicians who will not prescribe certain amounts of pain medication they consider addictive, and they may prescribe some, but they will not prescribe enough. If you assess a person on a visit to still be in a considerable amount of pain and cannot get the physician to agree to prescribe that medication, will you seek another physician so that the person can have pain relief? Have you done that?

MLH: Certainly the first step is to be very persistent with the chosen physician. We consider the relationship of the patient and the doctor quite sacred. It’s a choice. They’ve chosen that person to represent them and care for them, and we’re not there to interfere in that relationship. On the other hand, a person who is clearly unable to communicate, but expressing or obviously experiencing pain, then our next step as nurses would be to talk with our medical director, who is a full-time staff member at hospice. We consult with team members about how we might approach that problem. I have known our medical director, on occasion, to call and talk with a primary physician about the need for pain medication. Sometimes coming from a physician who is known to be very good in their field, it’s easier for a doctor to cooperate than it is when it comes from a nurse that they might not know and might not trust.

MHG: That’s a wonderful answer, and while I did mean to put you on the spot, I did not, by any means imply that physicians want patients to be in pain. The reality is that all of us have specialty jobs that we do in our lives, and many of us are more up on things than others, and all the current studies are that pain is pain is pain, and that pain is unacceptable, and particularly unacceptable to a person who is living out their last days.

CD: When you talk specifically about pain, there are other options than just the medicine for pain. In hospice we see all different kinds of pain. There’s emotional pain – the grief experience itself is just incredibly intense: deep, deep feelings that we really need to put a voice on and have somebody listen to us. That’s why hospice works as a team, so there are other people available also to come in to sit with the patient, to rub the patient’s hand so they lower the anxiety level for just a little bit.

MHG: I’m so glad you said that. One of the things I think – and I’m not an expert on this but let’s say that experts say this, because we’ve read this – is that people in pain need to be touched and they need to be held. Maybe not always, we all have our different styles. There may be a moment in my grief when I need to be alone and separate, but there’s a moment when I want someone to put their arms around me.

CD: We’re all human beings, and we need that contact. There are other benefits of hospice, not just the other team members that are available, but also it’s part of the hospice benefit that we provide the medical equipment that’s necessary for that patient. That’s part of what’s covered by hospice. Whatever medical equipment they need – the bed, the over-bed table, the wheel chair, oxygen if it’s ordered by the doctor – that’s part of what we’re going to provide to that family. Also what’s covered is all the medicine that patient needs that’s related to the terminal illness itself. That’s provided by hospice, paid for and delivered.

MHG: Is there any use of alternative types of treatment like acupuncture or acupressure or massage for pain relief that has been authorized by Medicare?

MLH: One of the wonderful things about the Medicare benefit is that we don’t have to ask them to authorize care. If a person is under the hospice Medicare benefit, then we are reimbursed on a daily basis and we can provide any type of care that we think is appropriate, as long as the family is okay with that. One of the things that is never covered under Medicare that I know of, that we can provide, is music therapy. This is something that very few agencies are able to have on staff because it’s expensive and it’s not reimbursed. Because of the way we are funded and the donations that come into us from families, etc., we are able to have a music therapist full time on staff. They spend a lot of time with children, they spend a lot of time with people in nursing homes or in homes that are very isolated. Music therapy is a very appropriate intervention for dementia. One of the most wonderful things that I have seen is that people who are completely withdrawn – do not speak, do not smile, do not have eye contact, you could never tell if they knew you were in the room – the music therapist can come in, know what songs they responded to in their youth or as a child or some family song they would sing on car trips or something, and start playing that on a guitar or a keyboard, and that person would start tapping their toe. So you knew they had contact. You knew they made mental and emotional contact with that human being.

MHG: So what’s so important about the all-embracing philosophy of hospice is that, at any level that we can, we are making contact with this person until the very moment of death, and for the people who love that person long past the moment of death.

MHG: You mentioned Medicare a number of times. Who pays for this?

MLH: By far, the majority of our patients are Medicare hospice patients, and that means that they are usually either disabled or over 65 and have qualified for Medicare benefits by paying into the Social Security system, and they have Part A of the Medicare benefit. Part A is the part of the benefit that covers hospice care. Some commercial insurance plans have a hospice benefit. We may actually go in under the home health benefit, but we provide the additional hospice services in those situations, even though sometimes the insurance would not reimburse. An example of that might be that even though, as a home health patient, they’re only going to reimburse for perhaps the nursing visits and the aide visits, and maybe a social work visit, we would still, if it is a hospice-appropriate patient, provide a chaplain and a music therapist.

MHG: Does Medicaid ever pay for hospice?

MLH: Yes, Medicaid has a hospice benefit also. It’s very similar to the Medicare hospice benefit. It’s reimbursed in a similar manner on a daily basis and it also includes medications and equipment that would not be covered under the regular Medicaid or Medicare benefit. Medicaid, of course, is dependent upon a family’s basic income and you qualify by having a limited income, so there are certain financial criteria.

MHG: I think that we’ve come to a good place to end. We’ve talked about what hospice care is, we’ve discussed who qualifies for hospice benefits, and who pays for those benefits.

But more importantly, Mary Lou and Cliff, I want to thank you for giving us a glimpse into the real mission of hospice..that each and every person should have the opportunity to live as fully as possible until we breathe our last breath. You’ve shared insights many of us did not have – that the hospice team of nurses, social workers, and ministers/chaplains are there not only for our loved one, but also for our whole family...and that no one will be denied hospice care because of inability to pay.