Chapter 1

Understand Basic Home and Hospice Care


This book is primarily about hospice palliative care. That said, most of the principles and tips provided throughout the book also apply to home care situations when you are caring for someone who has had a baby, is recovering from surgery or an illness, or who has a condition that requires long-term care at home.


   This book is based on the assumption that we can choose how we cope with our own illness or that of someone else. Any time you provide care to someone else, you have an incredible opportunity to slow down your life and remind yourself that nurturing relationships is the single greatest key to our personal and professional happiness.


Hospice Palliative Care

Hospice palliative care is about trying to meet a person's physical, emotional, spiritual and information needs. It is best practiced in a person's own home. When that is not possible it can and must be practiced as best as possible within other settings such as:


The home of a family member or friend of the patient

A free-standing hospice

Within a long-term care facility (including nursing homes) and within hospitals.


Pain and Symptom Control


Most people can be relatively pain free, comfortable and alert until they die. The days of people shouting out to die because the pain hurts so badly should be over.


   If a patient is suffering severe pain, get the doctor in charge to check with a palliative care specialist who can suggest methods to reduce the pain now. We have all the knowledge and skills, right now, to manage overwhelming pain. All of the pain may not go away. Most of us suffer from some physical pain from aging, arthritis, back problems, etc. However, unbearable pain is not necessary.


   The secret to effective pain control (relief) is giving the right drug(s), in the right amount, in the right way and at the right time. This balance requires physicians and other hospice team members to do proper, ongoing assessments of a person's pain and to consult with others who may have information that is helpful. Proper pain medication usually prevents overwhelming pain from returning while keeping the patient alert. If pain does suddenly increase (called 'breakthrough pain') extra medication must be immediately available to relieve it. In those rare cases when pain cannot be relieved enough, a person can be placed in a drug-induced coma for a period of time to alleviate the pain. No one needs to suffer the type of unmanaged pain that many of us have witnessed our parents and grandparents suffer.

   Once pain is managed, other symptoms like vomiting, bedsores, and dry mouths are more easily controlled.

   Remember that other medical and complementary therapies can reduce pain and symptoms. Use those that are most helpful and proven in the circumstances.


Personality

People's basic personalities do not change when they find out they have a terminal or life-threatening illness or when they are grieving. How they dealt with stressful or traumatic situations in the past is likely how they cope now.


Your Role

Caring for others in such a personal and intimate way is one of the most fulfilling and life-defining opportunities in our lives. When you care for someone else you know in your heart, mind and soul that you are making a real difference in that person's life. Caregiving gives us that unique opportunity to remember what is truly valuable in our lives and within our families and community. Caring is not always easy. It can be physically exhausting, mentally taxing and emotionally draining. It can also be exhilarating, rejuvenating, peaceful, joyful and awe inspiring.


   Choose a role that is comfortable and supportive to the person who is dying and to those who are grieving. You should also get the support from family and friends you need to help you help others. Hospice care is about mutually caring for each other.


   Not everyone you care for will be gentle, kind, grateful or thoughtful. Some have life experiences that preclude them from having such characteristics - especially as they near the end of their lives.


   Everyone, however, deserves the best care you can give them. That said, it does not mean you have to accept abuse or continuing unkindness. You are allowed to ask people to be civil and respectful. Just because someone is dying does not mean their community and family roles stop. They should still be expected to follow the general principles of a reasonable civil and respectful behavior. If they cannot behave that way to you, you can ask someone else with whom the patient is more comfortable to provide more of the care. If the patient is unkind and abusive to everyone, then someone in authority (family member, physician, nurse or administrator) needs to lay down the rules more forcefully.


Chapter 2

Basic Assumptions


There are a number of basic assumptions that can help you make ethical decisions in how you work. Many of you will have these basic assumptions already. They are probably part of why you instinctively do some things very well. By identifying these assumptions, and becoming more conscious of them, you are more likely to use them all the time. When instincts become part of your conscious thinking, they also become part of the discussions you will have with other care providers. You will be better able to explain why you do certain things or why you talk in a certain way with people and about the people for whom you care.


Relationships

Relationships are more important than: things, work or even good health. So often we talk about the importance of relationships in our lives and then ignore the most important relationships we actually have. Rather than nurture our relationships with our spouse, children, parents, grandparents, extended family and our best friends we actually end up spending more time with our work colleagues, the people who attend the same recreation centre, faith community or strangers at the local pub.


   If we are going to provide the best care possible to those going through their last illness and to their families, we need to model what we preach about the importance of relationships. We need to nurture those we love most. We need to recognize that things, work or good health are not more important. Our work needs priority when we are working but our relationships need priority when we are not working.


  An example of why even good health cannot take precedence over the importance of relationships is the story of “Liam” (name changed). Liam was a man in his 30s who was in one of my palliative care courses at a community college. He heard that my wife was pregnant and he knew that we already had a son. He congratulated me on the news of the pregnancy and then he said, “I bet you are praying for a girl now eh?”

I replied, “No, we are just praying for a baby.” He nodded and pretended to hit the side of his head. “Of course, that was not very politically correct of me was it? You are not supposed to wish that someone gets a girl or boy. But I bet you are praying for a healthy baby.”


   Again I replied, “No, we are just praying for a baby.”

“I'm sorry I don't get it. I understand it is not correct to say you want a boy or a girl but everyone wants a healthy baby!”

“If we prayed for a 'healthy' baby and our baby was born unhealthy in some way, what would be our first response? What would be the first response of our family and the care providers in the room? We don't want the first response to be one of sadness or even shock. We want our baby to be alive and welcomed with all the excitement and joy that every baby should experience upon their birth.”


  I was not trying to tell this man that we wanted an unhealthy baby to prove we are lovely people. I was trying to help him understand that the relationship between parent and child should not be based on whether the baby is healthy or not. Our bond is based on loving parents nurturing their baby.


  At the other end of life, the assumption must be the same. We nurture and care for those we love regardless of their wealth, health or their accomplishments. Those that we care for professionally or as volunteers deserve to be seen in the most positive light with our first priority to help them nurture the relationships that are most important in their lives. We should not try to become another important relationship as much as to nurture the existing ones.


   You do nurture and care for others using this assumption about the fundamental importance of nurturing relationships. Here are the top 10 ways how:


   1. Recognize that you are directly connected to everyone you meet; even people you do not like. We are all members of the human family. Although you are a care provider now, one day you will be the recipient of care.


   2. Although no one can like everyone, everyone can be treated with respect, compassion (walking with a person through this period in their lives), excellent medical and palliative care and spiritual love.


  3. Whatever draws people to you personally and professionally are exactly the skills you need to use when helping someone in their final months and days. If you are a great listener, then the person will probably want to talk to you. If you are a jokester, then the person will benefit from your sense of humor and 'weird' perspectives on life and death. If you are a 'do-er,' then they may turn to you to help with the practical legal, financial and funeral preparations. If you are a nurturer, they may ask you to help them care for their family after they have died. Whatever draws people to you is what you can best use to help someone. Although a hospice palliative care course can help professionals and volunteers expand their skills base, for family and friends, they really need to concentrate on what they already do very well. They should never feel like they need to read a ton of books or take courses to help a loved one live fully until they die.


   4. Friends are not paid, therefore, staff cannot be true friends. They can always be friendly, supportive, encouraging and excellent listeners, but they cannot be true friends unless they also spend lots of their free time with the person, invite them over for special holidays and celebrations, have their family join your family for activities, etc. What you can always do is help nurture and encourage the natural relationships people already have with their family, friends, neighbors and acquaintances.


   5. Some care providers who have spent a long time with a patient or client feel like they are friends and object to this suggestion that they cannot be friends. This is more a semantic argument. In my mind a friend is someone who visits me and does not have to leave at the end of a “shift.” Friends invite me to their homes, gossip about their work colleagues and bosses, and so much more. Paid staff and even volunteers are loyal to their service more than they can be to their patient or client. The easiest way to determine whether you are a friend or a staff or volunteer is to decide if you would give up your position to remain loyal and more supportive to the person you care for. Since most of us cannot afford to do that for everyone we provide care, it is best to concentrate on supporting and nurturing those relationships with families and friends that already exist or helping create new friendships for people isolated from their family and community.


  6. Another aspect of this point is that some people, especially in smaller communities, may be friends first, or related to someone, for whom they are now providing professional care. This becomes more complicated in deciding which “hat” you are wearing when you are with the person. Nurses, for example, who are caring for a neighborhood friend (in the hospital or at home) must switch between being the professional to being the friend. They must deal with their own emotions while helping their friend professionally live as fully as possible until they die. Other care providers and family need to recognize this difficulty and allow the person to fulfil both roles but at different times. Sometimes we feel most comfortable fulfilling our professional roles but we still need the support of others to go through the emotions of losing a dear friend during their final illness.


  7. Help create memories using humor and creativity and a conspiracy of well-meaning people to help patients, their families and other caregivers. Memories are what we turn to in times of great difficulty and grief. We remember the good and the bad. A terminal illness gives us an opportunity to add new memories for both the patients and their families and for other care providers. A few examples:


   (7.a) A young woman, 16 years old, was dying in a large university hospital. Her family were nearby but all her classmates were at least 5 hours away in her hometown. She knew and accepted that she was dying but she was clearly unhappy. The social worker helping her asked what was making her unhappy. The teenaged girl said she missed her friends. The social worker immediately understood. The social worker wanted to go the extra mile for her. So, after many phone calls to the girl's school principal and various other people, a school bus made the trip down to the city filled with the girl's friends. A special party was held in the hospital's auditorium. The girl knew her friends were coming so she made each and every one of them a special gift that she handed out at the party. Every person there from the patient, her family, all her friends, the bus driver, the principal, the social worker and other care providers all participated in something truly unique and wonderful. The memory of that event will last forever in the minds of everyone who attended and helped make it possible.


   (7.b) Another example is a palliative care nurse who was caring for a young, recently married woman who had terminal uterine cancer. After many conversations together the nurse found out that the woman would dearly love to go to her favorite restaurant with her husband one more time. That was not possible given her condition however the nurse began to think of an alternative. She and another nurse rented tuxedoes and arranged for an ambulance to take the woman home for the evening. They had ordered food from the woman's favourite restaurant and served it (all dressed up as formal waiters!) in her own dining room. They did not chat with the young couple but served them as if they were in the restaurant. Then they quietly did the dishes and left the couple alone for a while. Then the ambulance came back later and returned the woman to the hospital where she died a few weeks later. Again, everyone who participated from the chef at the restaurant to the young couple and the nurses have a memory for a lifetime to share, relive and remember.


   8. Volunteers have great opportunities to help. One man was visiting an elderly gentleman through a hospice program. The volunteer and the elder exchanged many stories during these visits to the point where the volunteer said, “Would you like me to help you record some of these stories as an legacy for your family?” The elder agreed and over a number of visits the volunteer used a tape recorder to record the stories which he then typed up on his home computer to create a “book,” complete with scanned photos, for the elder to give to his family and friends on his 80th birthday. The legacy of this mutual gift will live on for generations through one volunteer's efforts.


   9. Perfection is not possible. Perfect relationships do not exist. Conflicts will happen. However, when we compromise our care, for whatever reason, we must recognize the compromise so that it never becomes the preferred norm. For example, just because some people feel relief when they resolve a family dispute before they die does not mean that everyone who is dying should be coerced into trying to resolve all family issues. [It's not possible, even if you tried!] Always stayed focused on the individual's and family's needs rather than compare their situation to others you have already experienced. Start from scratch so that you don't impose your experiences onto them.


  10. When people say their final goodbyes to the person who is dying, it can be very helpful to have someone else outside the room to give them a hug, offer a word of support, get them a cup of tea or whatever the person may find helpful and supportive. Saying goodbye is physically and emotionally painful. Anticipatory grief is equally painful. People who support someone who is dying also need support. Help each other. Comfort each other. This is part of the mutual gift of caring. Teach each other deep breathing techniques so that before you enter a patient's room, you slow your respiration and heart rate so that you become a calming presence rather than an anxious one.


Is It Better to Give than to Receive? NO!

The quote from the Bible about giving being better than receiving (Acts 20:35) is based on sharing one's home, clothes and food with others in need. The hope is that one will share one's “things” with others so that no one goes without.


  This concept of giving some of one's possessions to the poor is an admirable one. It has come to mean, however, that is better to help others than to ask for, or accept, help yourself. This lopsided view of care is one of the major reasons people refuse to accept help or refuse to ask for help from their own families and community services. They feel they are a burden rather than an equal partner in the mutual gift of care. 


   Ask yourself, would you rather offer and give support than ask for it or accept it yourself? How often in the past few years have you refused the help of others because you did not want to “burden” them or impose on them? How often do you refuse help because you think that accepting it would be a sign of weakness? If you answered 'yes' to any of these questions then you consciously or unconsciously view “caring” as an unequal relationship where only the care provider truly benefits.


  An example of why this hurts us - when my father was in the ICU of a local hospital on the brink of death (he survived and was able to come home to live until his death weeks later) I was standing in the waiting room talking with my fiancée. I do not know why I said it but I said, “You know, if ever this should happen to you, I will take care of you forever - I love you so much.” Rather than leave well enough alone I then added, “But I am not sure I would want you to do the same for me.”


   I thought I was being thoughtful and considerate not expecting her to have to care for me should I get as ill as my father was at the time. She listened to what I had to say and then hit me. “How dare you think that you are a better person than I am!”


   Of course, that is not what I was consciously trying to say at all. I was trying to say that I would care for her forever but that I would not ever want to be a burden to her if the roles were reversed. In hindsight, of course, I was saying exactly what she heard - “It is better to give than to receive care.” I was saying that I would be a great husband but that I wouldn't expect her to be a great wife. How arrogant could I be? How arrogant are the rest of us who believe similar things?


   I think it is dangerous to have such a belief. It forces people to refuse help and to die alone and lonely. It forces people to think they are burden when, in fact, they never viewed the people they cared for as burdens. It gives people an excuse not to allow people to feel as good about helping as they felt when they did it. It allows us to construct walls around us that we only choose to let people through on our terms.


  The last gift we can give to others is the gift of allowing them to care for us. It really is that simple but certainly not always easy. I tell patients this all the time. At the end of our lives, we have the responsibility to allow people to care for us so they can learn many of the same wonderful knowledge and skills that we learned when we were providing the care. How can we expect our children and grandchildren to learn about what it means to care for someone if we only have allowed paid strangers to care for us?


   One last example - a nurse came up to me after a presentation and told me about when her mother was dying. The nurse had two brothers and she was the only daughter. She took on the responsibility of caring for her mother at home while also having a family to raise herself and to work full time as a nurse. After a few months she became physically and emotionally exhausted. She could not do it anymore. So she called her brothers in and said, “I just can't take care of Mom alone anymore. You need to help.”


  “But we do help!” they answered. “We take care of the legal and financial stuff for Mom. We've prearranged her funeral. We've checked into how to sell the house after she dies. We are doing our piece.”


  The nurse answered, “That's all true but I can't physically provide all the home care that Mom needs and that she can't get enough professional home care. I need more help with her personal care.”


  Now many men have very limited experiences with personal care of others. Some are getting used to helping with their babies but, on the whole, a lot of personal care of older children and older parents is still done by women. Where a husband is alive, however, most of them are providing the physical personal care to their wives so as not to “burden” the children.


  The brothers understood their sister had reached her end. With great fear that they would do it all wrong, they learned how to help their mother eat, help her get to the bathroom, give her bed baths, etc. They learned quickly that it was not hard compared to what they thought it would be like. In fact, the mother took the daughter aside one day and said, “I want Mike to give me my bed baths from now on. Is that okay?”


   The nurse was partly hurt that something she was a 'professional' at was now being completely taken over by her brother. On the other hand she recognized how the bed baths were changing her brother's self-confidence and self-perception. The mother was giving her son the gift of care. She understood that her son would be a better husband, father and friend because of giving her the gift of a bed bath. Each learned, over some difficult hurdles, that this experience of caring for their mother was changing them as adults as well as changing them as siblings. The family became closer because of the care they provided their mother. There is no greater gift to a parent who is dying than watching her children become closer.


  This closeness won't happen in every family, of course. It is unrealistic to expect it. It is not unrealistic, however, to nurture it whenever you can and to nurture it within your own family always.


No Pedestals Please!

Have you ever been at a party and someone asks what you do. You mention that you care for people who are dying and they either immediately change the subject or they get that glazed look in their eyes of awe. They say something like, “Oh my goodness. I could never do that. You are so special. You must be like an angel to those people. You really are special.”

Whether they actually say those words or it is their body language that says it, they are doing you and themselves a disservice.


  When people want to raise you onto a pedestal because of how 'special' you are, what they are really doing is giving themselves an excuse never to have to try to provide personal care to someone they love. It implies that because you are so special, they do not have to make an effort to be supportive of someone going through grief. This belief that you must be trained and inherently “special” to be supportive makes them feel incompetent and not special enough to be the caregiver that they may well want to be.


  In my case, had someone said to me, “Don't worry Harry. We'll take care of your mother for you,” I probably would have been immensely grateful to them. I would not have learned what I was missing. As hard as providing care can be sometimes, there are also many wonderful gifts of care that go on. If you are not participating in that care, you cannot experience them. It is combining the best palliative medical care and personal support (through family and friends or through formal programs) that we all benefit.


   Being on a pedestal can also be a very lonely experience for the person put up there. Do not allow people to think you are so special that you deserve to be up there on a pedestal. Remind them what it felt like when you first started - how incompetent you may have felt or frightened of doing the wrong things. Tell them of the good and the difficult. Tell them how life affirming the experiences have been while also being difficult. Encourage them to learn some basic home care techniques so they are ready when they need them. It is never too early to learn about physical, emotional, spiritual and information care in all health care situations.


  Be a role model but one grounded in reality and within the hospice philosophy of care. 


The Most Deadly Phrase

Each of us carries within our minds a phrase - the most deadly phrase in hospice palliative care. This phrase is:

I would rather be dead than have…


Each of us has a different ending to the phrases - perhaps many endings.


“I would rather be dead than have ____________.

dementia

cancer

AIDS

ALS

heart disease

to lose a leg due to diabetes

to be poor, homeless, disabled, lonely, isolated, live in a long-term care facility.



How would you finish this phrase?


I would rather be dead than


_________________________________________.


Why is this such a deadly phrase? How you fill in the blank above tells you which of your patients or clients are least likely to receive excellent care. If you would rather be dead than have cancer, how are you going to care for people who have cancer? Can you distance your own fears from the care you provide them?


  If you would rather be dead than have dementia, what type of supports and outside help would you encourage for a patient who has dementia? How hard are you going to fight for supports when you think the patient, like you, would likely rather die than move to a long-term care facility or move in with a son or daughter? If the person had heart disease instead, perhaps you would advocate more strongly to get them the services and care they need. Since they have dementia, will that change how you advocate for them?


  If you answer yes and that means you will likely find it hard to care for them as strongly as for someone who does not share your fear of this condition, then is it possible to transfer this person to someone else's care? If you cannot transfer the patient who can likely provide better care, how can you overcome your fear to provide life-affirming care when this person needs it most? How can you draw in their natural supports (e.g., family and friends) that will want to help the person live as fully as possible until they die?


   Can you identify any fears you had when you were younger and how you overcame them? For example, I used to fear dementia a great deal. Then I saw some of the benefits of short-term memory loss in a man I used to visit. He had a horrible obstructed bowel that required difficult enemas on a regular basis. The nurse who performed these was always the same person. She always apologized for the discomfort she was causing him. What made the care easier for her was that he forgot who she was every time she visited. He also forgot the procedure he had within minutes of having it. He remembered much of his past and recognized his family but forgot, almost immediately, what he had eaten, what treatment he had, or who visited him earlier.


   A daughter of a man who had Alzheimer's disease told me her story. Her grandmother had Alzheimer's disease so her father knew what to expect when he was diagnosed. His first comment to his family was, “This is going to be a lot harder for you guys than for me.” He had already experienced what it was like when his mother became increasingly ill. He had led a very active and accomplished life rising to the top of his profession. His family was all grown up with grandchildren and he wanted to spare them some of the suffering he knew was awaiting them. In discussions with them, he described his own feelings as a son when he went through the experience with his mother. Then he discussed what would likely happen to him and how he felt his children and grandchildren could help. It was an open discussion. The discussion meant that the family was prepared for the imperfect last years with their father. There would be ups or downs. But they were somewhat prepared and they walked the final miles with him as best they could. The father never said, “I would rather be dead than have Alzheimer's.” He said, “Some of my care should be done by professionals so I am, at some point, going to move to the veterans' wing of the hospital. It may be sooner than you think I should go but I want to get to know the folks there and make a difference in their lives while I can. That way they will also get used to me and what I need. I'll come home on weekends when I can until that becomes too difficult. Let's do this as best we can together.”


   Aside from how you would fill in the sentence “I would rather be dead then,” there are other questions for you to consider:


What steps can you take to help overcome your own fears so that it will not impact the care you provide? This question will require some real effort and time to answer. Dealing with our fears is not a quick fix. It requires thoughtfulness, asking family and friends for help to look at coping strategies and, perhaps, professional help to identify and deal with your fears.

Who can you go to for help, guidance and mentorship?

How can you help others overcome similar fears?

Will you agree with decisions by other caregivers when they are more life affirming than your own decisions might be? If a patient has ovarian cancer and you believe they would be better off dead than alive, will you defer to the patient, family and those colleagues when they make difficult decisions that will likely lead to a longer life, regardless of the 'quality of life' as you see it?



Identifying Your Limits

There is an exercise I do with participants in my workshops. I ask them to close their eyes and imagine one or more of their patients or clients. I play some music in the background so that they can quietly answer the following questions to put their care into perspective.


   There are limits to what we can do for people. There are also limits to what patients and their families can do for us. When we identify them, we may feel less anxious that we are not doing enough and we can, perhaps, reduce our expectations of those we care for. Here are the questions:


What is it that I can do to help patients and families?

What is it that I cannot do, no matter how much I wish I could?

What is it that patients and families can do to help me?

What is it that they cannot do, no matter how much they wish they could?


Let us look at each one more carefully.


1. What is it that I can do to help patients and families?

Here you can identify both your knowledge and skills that can help a patient and their families but also a list of the personal attributes you bring to someone - your beliefs, your assumptions and how you can help them nurture the relationships important in their lives. You are an individual with individual tastes and talents. Identify those that can be helpful to a specific patient and their family.


2. What is it that I cannot do, no matter how much I wish I could?

There are some things you cannot do either because they are beyond your experience or skills or because they go beyond your own personality or beyond the circumstances. For example, you cannot pretend to belong to a person's faith when you have a different one. You will need to bring in others from the person's own faith community to help meet some of their specific spiritual needs. That does not prevent you from sharing some aspects in common between all faiths but it does limit you in following some of the traditional rights and rituals of the patient's faith. Another example may be that you would like to help the family resolve decades-old conflicts but you have neither the skill nor time to do it well. It may be something you would like to do, but you cannot in these circumstances.


3. What is it that patients and families can do to help me?

Part of the philosophy of care described in this book is that care, to be truly effective, must have mutual elements to it. That means, it is not better to give than to receive, therefore, patients and their families must be allowed to give back to you in some ways. What ways might that be so that they can help you with your work? Several examples: if you are coming to provide personal care, any family members present could have all the necessary towels, soaps, etc. ready for you and they can offer to help with the personal care so they can learn from you. If you are a volunteer coming over to help the person respond to letters they have received, the person or family could have the letters, cards, stamps, pens and such laid out for you or they might make you a cup of tea while you work with the patient. This sense of mutual care can be very practical or it can also be that they give you a warm smile when you visit or a hug of thanks or a homemade cookie. It is about sharing in the care in whatever ways are possible.


4. What is it that they cannot do, no matter how much they wish they could?

One of the things that patients cannot do for you, even if they really wanted to, is to get well. This may seem an odd thing to say to a professional or volunteer palliative care provider. But sometimes, that is exactly what we wish the patients would do - get well. How can you identify when this is happening to you? Perhaps you want to try to feed a patient who is no longer hungry. You might see desire for the patient to get well in your colleagues (professional or volunteer). For example, you may see someone try to get a life-long smoker to quit (as they did with my father who had emphysema) in the last weeks of their life. In fact, this hurts the patient as smoking actually increased their intact of oxygen (through the deep breathing in that smokers do). Another colleague might encourage a patient to try the latest alternative medicine regime in hopes that it might work. All of these things are ways to tell the patient that we want them to try harder to get well and all of them, likely, will be unsuccessful and even unkind.


  There are other things that patients and families cannot do for us even though they may wish to. For example, they cannot fix the health care system that expects too much from too few staff and volunteers. They cannot find enough money to safeguard your program. They cannot find the energy in their last weeks, likely, to always smile and “be happy” when you come to visit. Your expectations of them have to be realistic to the circumstances, no matter how much they would actually like to meet your spoken and unspoken expectations.


  So put on some quiet music, put your feet up and enjoy a warm cup of tea or a cool glass of your favourite drink and think about the answers to these four questions for yourself. It is important that you know what your limits are and the limits of those you care for so that you use your knowledge, skills and energies to their best.






Chapter 3

Helpful Assumptions to Hold and Role Model


Some of you reading this book will have administrative or political influence in how your program and services are provided. Others of you are direct bedside professionals, family members, and volunteer care providers.


  Each of you will have influence over the types of services that the actual patient and their families receive. Because of your influence, it is important that you have certain helpful assumptions in designing and providing your care. You may not be able to control all aspects of the care delivered to your patients and their families, but you can greatly impact on their lives through your own assumptions and actions. Some of these assumptions are so obvious you may feel like skipping over them. Remember, that you are a guardian of the modern hospice movement and that what is obvious to you is not obvious to your patients, their families, members of the community and those with political control over your program. The more you can speak about these assumptions, the more likely others with begin to use them in making life and death decisions over your patients.


Death is a natural process--a part of living.

Each life is valued and should be preserved and supported to its natural end.

People can have valued roles until they die (i.e., maintain or enhance typical roles).

Whenever possible, concentrate on enhancing natural supports (family, friends, neighbors) versus program supports.

Servers should be loyal to the person and family who is ill rather than to their service.

The person receiving service, the server and society all benefit from the relationship.

The spiritual foundation of hospice care is fundamental to its success as it reminds us of its roots, its basic philosophy and our need to put patients and families above systemic and bureaucratic needs.


Let us look at each of these:


1. Death is a natural process--a part of living.


The hospice movement began in part because many people were dying in Intensive Care Units where every thing was done to save a person's life even if they were obviously dying.


  People were force fed, given ineffective and painful test and treatments, and isolated from their loved ones all in the futile attempt to save their lives. Death or dying was not discussed as this was too time consuming and physicians and nurses were often very uncomfortable with the topic themselves. After all, it was never part of their training. To see death as a natural process was, in fact, seen as “giving up” and, therefore, not acceptable. More and more people now acknowledge this basic assumption of dying but it is certainly not a universal assumption.


2. Each life is valued and should be preserved and supported to its natural end.


We know that some people 'naturally' receive better care than others. It is mostly a subconscious process but in many cases it is also very overt. People with mental illnesses, for example, are less likely to receive support to live to their natural end. Elderly people are often assumed to be wanting to die so will not be offered certain treatments and care that will prolong their lives in the same way as someone with a similar condition who is younger.


  A reporter once asked me what I would do if an elderly person came into the Emergency Unit of the hospital and I was the physician attending to them. Would I provide life-supporting treatment to them? I asked the reporter if the elderly person was ill? The reporter replied, “I don't know. They are just old. Would you treat them?” My answer was that until I knew what was wrong with them that I would, of course, treat the person. The reporter could not understand my answer. Why would you treat an old person? The answer to that is this assumption that each life is valued and should be preserved and supported to its natural end - not prolonged painfully or cruelly; neither shorted based on our perceptions of what the person wants or needs.


3. People can have valued roles until they die (i.e., maintain or enhance typical roles) to ensure they get better treatment.


Earlier in the Introduction to this book you read about Mr. G and his granddaughter who saw the whole man rather than the ugly tumor covering the lower part of his face. This granddaughter reminded everyone that this patient was also a husband, a father, a grandfather and friend to many others. These were some of his valued roles that he, and those caring for him, had forgotten. This assumption of maintaining and enhancing one's typical and valued roles is about seeing beyond their physical, emotional and spiritual condition and helping them to live fully until they die. Role modeling this approach is one of your most powerful gifts of care.


  When my father was diagnosed with cancer he was forced to quit his work. He was still able to work but the label of cancer frightened his young employer who told my father he needed to retire “for his own good.” This changed my father's role from property manager to cancer patient. It changed his daily routine from one of a valued worker to one of a patient waiting to die. Like so many other people in similar situations, his life was probably shortened when his perceived value was diminished. Although he was still a father and grandfather, he saw himself as less valuable. Medically, he was no longer the patient who arrived in a business suit with years of work life ahead of him but an emotionally diminished man awaiting his death.


   As a professional or volunteer caregiver, as well as family members and friends, your life affirming perspective will help people like my father. You can help them deal with the real debilitating grief of job loss while helping them recognize the practical ways in which their lives still matter as parent, grandparent, sibling, friend, neighbour and fellow patient. There is much that patients have to offer but they often need someone else to tell them what that is.

When they recognize these 'gifts' they have yet to offer, they are more likely to arrive for medical appointments and treatments with hope that in turn often leads to better care.


4. Whenever possible, concentrate on enhancing natural supports (family, friends, neighbors) versus program supports.


Many people have at least a few people around them who care but who are afraid of doing or saying the wrong thing. How you treat and speak with the patient in front of their loved ones is one way to enhance the natural supports available to the patient. When a spouse or adult child sees you give a bed bath, listens to the words you use and the compassionate body language you project, they learn from you. When they see that when you sit beside the patient rather than remain standing and looking down on the patient, they will copy you. When a patient needs a stronger advocate because of their circumstances, you can provide their loved ones with specific ideas and questions to ask of the right people so that the patient receives the care they deserve.


  For example, when you ask specific questions about pain and symptom control, families will learn the type of questions to ask. More importantly, they will learn that such questions are okay to ask. When you suggest that a patient and their family request a second opinion, it shows that such request are normal and acceptable. When you suggest that a family member always attend all medical appointments and that they take notes, you are giving them permission to ask questions and record answers so that you can help the patient understand the information during and after the appointment.


5. Servers should be loyal to the person who is ill and their family rather than to their service.


If a service would actually allow their staff and volunteers to be truly loyal to their patient first, then you could advocate as strongly as you would like. However, that is likely not the case for many reasons. However, if you assume that your loyalty is first with the patient, even if in reality it cannot be because you need the job, then you will see areas where you can advocate more strongly while also nurturing loved ones to fulfil an even stronger advocacy role when you cannot. This is the main reason to strengthen a person's natural supports - because they can be loyal to the person first.


6. The person receiving service, the server and society all benefit from the relationship.


Many people believe in the adage “it is better to give then to receive.” Because of this assumption, providing care is often seen as a 'charitable' act rather than as a mutual gift of care. As a charitable act, the program and services you provide can be easily cut when 'higher' priorities require the resources. When people see that the patient, server and society all benefit from the hospice care relationship, society and governments are less likely to cut funding, diminish the importance of your care and, perhaps, even recognize that all dying patients are only slightly farther ahead in the line-up to death than they are.


7. The spiritual foundations of hospice care are fundamental to its success. They remind us of its roots, its basic philosophy and our need to put patients and families above systemic and bureaucratic needs.


Spirituality has to do with who we are as people.  Religion has to do with how we practice our spirituality, if at all, through various religious beliefs, practices and rituals.  We are all spiritual people in the sense that we all have a need to know our lives have value and meaning.  We are all children of God, however we describe God, and we are connected to each other, and to all nature, as members of a living community. 


  The only thing that separates us spiritually is our belief that separateness is possible. Our spirituality is often best expressed in times of great joy or distress. It is felt during moments of genuine bliss when we watch our baby sleep, see a sunset from our favorite mountain, or listen to the calm of a summer breeze.


  All ancient spiritual beliefs have similar principles of compassionate care for those who are dying. Whatever your spiritual belief and traditions, use them to remind yourself of the unique opportunities that hospice palliative care provides you to make a real difference in someone's life everyday. Modern health care has divided physical care from emotional and spiritual care. Traditionally physicians and nurses were often seen praying with their patients, fluffing their pillows with a kind heart, helping them on with their clothes after an examination and so much more. They had the common bond of being children of God, however they defined God. In modern times, this unique human bond has been separated so there is a clear “us” and a clear “them.” Even health care providers themselves, when they are patients, remark on how different they feel and how isolating and fearful those differences can be. It is only when they are treated as people first rather than patients that they feel comfortable lying on the patient bed.


Questions to Ask Yourself

To evaluate what you do and the impact it has on your patients, their families, your colleagues and your own family, take a few minutes to answer these questions.


Who is benefiting most from the palliative care services provided? Is it really the patient and their family or are the staff, volunteers, government and other funding agencies benefiting most? How can you tell? Are staff and volunteers spending more time with each other than with patients and families? Are government and other funding agencies providing the funding because they truly care for the patients' needs or are they providing only sufficient funding so they can 'prove' that they are doing something to the voting public? Are the funders so active in the running of the program and services that the organization can no longer provide the care that they used to provide so well.

What are the values your program uses in developing, applying and evaluating your services? Are they coherent? By coherent I mean, are these values known, disseminated, internalized, and safeguarded with checks and balances to discourage abuse of the patient and their family? Do the values lead directly to practical approaches to care that affirm the importance of the patient's life until they die a natural death? When people are uncertain of what to do, do they revert back to these values to decide what to do next? For example, is there a strong stance against institutionalizing patients except as a last resort? Are the patients, family and friends recognized and helped to provide mutual care? Are emotional and spiritual supports seen as more important than high tech alternatives?

Is professionalization of hospice palliative care overtaking your work and destroying the essence of knowing the people you serve, knowing your colleagues and knowing the community? In other words, are the staff and volunteers professionalized and specialized and segregated to the point that people in the community cannot possibly imagine themselves capable of helping their loved ones through their last illness?


How are patient needs assessed and taken into account to ensure their physical, emotional, spiritual and information needs are met? Are the actual needs of the patient taken into account rather than using a standard assessment process that misses many of these points?


   For example, my great aunt was a Catholic nun. When she was dying she refused all pain medication saying, “I came into this world without drugs and I will leave without them too. I will be comforted by my faith and by God.” A standard assessment of her may well have identified her need for spiritual control over her death or it could have labelled her with all sorts of terms that would have prevented her from living out her life as she had thoughtfully decided. Her assessment form may have had words like non-compliant, in denial, requires psychiatric assessment, and more. The convent where she lived supported her decisions and cared for her through what many would have called a difficult, painful death. She died, however, as she wished and was supported fully by her religious community. Does your service provide as much personal control to your patients?


Once you have answered these questions for yourself, consider sharing your conclusions with your colleagues to see what they think. People can never think or belief in exactly the same thing or act in exactly the same ways but they can be encouraged to see how their beliefs can help, or harm, the people for whom they care. You can be that catalyst.


The Most Fundamental Hospice Care Question to Answer

When I teach hospice palliative care courses at colleges and universities I hand out the final exam question on the first day of classes. I tell the students that at the end of the course, they will be asked to write an essay answering this single question:


Why would someone near the end of life

want you in the same room with them?


They are told to answer this question with complete honesty and within the context of their personal and professional/volunteer life.

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To help you answer this fundamental question, use the chart on the following page to identify your beliefs and assumptions. Our beliefs and assumptions impact our conscious and unconscious behaviors. Each strength you have, such as a “giving spirit,” can turn into something harmful. If you give so much of yourself that you do not allow others to give back, you have turned a strength into something harmful.


   Another example of how any of your strengths can turn out to be harmful is a woman that I met at a workshop for volunteer chaplaincy workers at a hospital. I had presented to a group that was half Christian and half Muslim. During a break this Christian woman came up to me and said, “They very nice aren't they?” I answered, “Who?” “Those Muslim people over there. They're really nice aren't they? But you know what, they will never get to heaven.”


  Her comment was not distressing because of her belief of who would and would not get to heaven. Many people have beliefs that are different than my own. What was distressing was that she was a chaplaincy volunteer in a hospital that had a very diverse population of patients within it. I spoke with her and her Director of Chaplaincy to ensure that this volunteer would only ever be assigned a patient with her specific faith. That didn't mean assigned only to Christian patients. It meant that she would only be assigned Christian patients of her specific denomination. A person's faith cannot be questioned on the basis of right and wrong. It can however inform you as to whether the person would be comfortable with only patients of their specific faith or with people of many different faiths. Her faith was a great strength and comfort to her. Her faith would also harm patients who did not share in her faith and who might be spoken to about how they could convert, before they died, so they too could get to heaven.


  Once we know our beliefs and assumptions we are better able to answer “Why would someone near the end of life want you in the same room with them?”


   As a background to the question, imagine yourself lying in your bed at home looking up at the ceiling. Surrounding your bed are the people you love most in life. Imagine their faces looking down at you.


They are watching you breathe and, actually, they are waiting for when you are no longer breathing. This is your deathbed. Given that is the scenario for most of the people you care for, why would they, or should they, be introduced to you at such a time in their lives? Why would they want you in that room with them? Of course, many of you will know the patients before they get to this stage, but the question remains - why would they want you present over someone else? Why should they have to say goodbye to one more person in their lives when it is hard enough to say goodbye to the people who are already there?


Impact of Your Beliefs/Assumptions

Look at each heading in the chart below and evaluate how any of your assumptions and beliefs can both help and, hinder other people - those you care for as well as those you work with. 


QUESTIONANSWERMAY HELP or HARM Others

What assumptions about life and death do you strongly adhere to? e.g. freedom of choice, sanctity of life, elders are to be respected and listened to vs. elders must be protected.

What elements of care are you most comfortable in providing: physical, emotional, spiritual, advocacy?

Where do you feel most comfortable in practicing your profession: person's home, residential setting, hospital, LTC facility?

Do you see your relationship with your clients as care giving or mutual caring?

What do you fear most about providing service to clients? How do you deal with your fears?

What gives you comfort when you are under a lot of stress?

What can you do for others?  What can you not do for them? What can they do for you? What can they not do for you?

Have you ever "walked in the shoes" of a client to understand their experiences?




When you look at the assumptions presented early on in this chapter along with your answers in the chart above, how will you answer: Why would someone near the end of life want you in the same room with them?


Gift of Care


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Copyright © 2007, 2008 Harry van Bommel

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