HOSPICE

When confronted about a conversation about hospice care, myself and many others have an idea of a small, dark, dingy, and scary place filled with death and despair. Hospice, in my mind, is the last place any dying person would want to be during that last few months of their lives. The doctors do nothing but drug their patients into death, almost as if they are assisting in suicide. The nurses treat the dying as if there will be no memory of them to live on. The families have forgotten about the member who is leaving this earth and they continue on with their everyday lives. In a nutshell, hospice was a death-filled place with nothing but sorrow in it. However, during a class on death and dying, I started to learn more about hospice care, the different elements of it, and how understanding the staff on the hospice team is. As I researched deeper into the subject I found that not only is hospice care beneficial to the dying person, but also to the families of the dying person. In this paper, I will discuss the history of hospice care and hospice care in North America including the United States and Canada. Then I will discuss what hospice care really is, who needs and uses it and where hospice care is located. Afterwards, the topic of the hospice team and the family roles for the patient in hospice will be discussed. Finally, I will wrap up with statistics, affordability, and a few myths and facts (some of which I believed) that can be dispelled. At the end of this paper, proof will show that what most who think of hospice care as a 1900 psychiatric ward are wrong and that hospice care is a beautiful and magnificent place to be able to say a last goodbye. The term hospice can be traced all the way back the medieval times. It referred to a place where tired or ill travelers could take a rest from a long journey. It wasnt until the 1950s that a woman by the name of Cicely Saunders that revolutionized ideas of hospice cares and was implanted into the worlds mind. Cicely Saunders was a prominent nurse, physician, and writer.

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She spent eleven years researching palliative care in modern medicine. She helped the dying and terminally ill end their lives in the most comfortable way. In 1979 Cicely Saunders was honored with the title Dame Commander of the Order of the British Empire by Queen Elizabeth. The rise of modern hospice is because of Dame Cicely Saunders. A physician by the name of Balfour Mount was the lead the way in the hospice care movement in Canada. Balfour read the work of Kubler-Ross (The Five Stages of Grief) and decided to spend a week with Dame Cicely Saunders. Mount was so inspired with Saunders that he adopted Saunders model and adopted it to Canada using hospital based centers. By using hospital based centers, Mount was able to use government based funds to support the hospice programs. Mount was the physician that coined the term palliative care. In the United States, the first palliative institutes began in the 1980s. The two major hospitals to adapt this idea were Cleveland Clinic and Medical College of Wisconsin. It was only a short 15 years later, that hospices were a 2.8 billion dollar industry and 72% were non profit. Hospices in the US were 70% volunteer based, trained to take a load off of the hospice care team. The main question that comes to everyones mind is what exactly is hospice care? According to Hospice Foundation of America(2012), hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. Hospice care is not meant to prolong life or accelerate death. The main goal of hospice care is to make the last days of a persons life as comfortable as possible and with as much dignity that can be offered. Hospice only offers palliative care, not curative care. Palliative care, according to the Palliative Care

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Organization(2012), is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stresses of a serious illness whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is different from curative care. Curative care is care that overcomes the disease, and promotes recovery according to the Center for Medicare Advocacy. If a patient in hospice care would like to explore options in curative care, the patient is encouraged to seek the treatment. However, if the treatment is not successful, too expensive, or just too painful to endure, the hospice will always accept them back into care. Who exactly needs hospice care? There are children hospices, adult hospices, and geriatric hospices. Each hospice deals with their age range accordingly, but the care is always the same. Pediatric hospice care, while important, is most times overlooked when the word hospice is mentioned in a conversation. People dont often want to address the issue that children die from terminal illnesses everyday and their support system has to be even greater because of their innocence provided by youth. Children often know theyre dying because they arent like other children who are playing outside with their friends. They see their hospital peers leaving them, and the fact that they have to go through (often times) painful treatments show they are different. Adults have a clear understanding of what death is. They have had time to come to a definite conclusion on what death is. However, children may not have a concrete understanding about what exactly is happening to them or what will happen to them. This is where a well trained hospice team and family support system comes in. A trained hospice team can help fill in the blanks and answer any questions that the family may not be able to answer for the child.

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The next hospice is adult hospice. These are patients ranging in age from 18 to 54 years old. Adult hospices have to deal with the fact that a major role in a familys life will be taken away. All while dealing with death, living wills, wills, funeral arrangements and spiritual guidance. These focuses dont take precedence over anything more than in a pediatric hospice. It is just the fact that a middle aged man has more to deal with in his life than a child does and is dealt with accordingly. Finally there is the geriatric hospice. This is the hospice care that everyone associates with a hospice. The general idea is that everyone dies when they are old, this must be the reason why all old people are in hospice care. This is simply not true. Nevertheless, the population is more familiar with geriatric hospice. Hospice care can take place in a number of settings including home, facility, inpatient, hospital, and nursing. Home hospice is when a primary care taker from the family or even a full time hired nurse takes on the bulk of the responsibility of caring for the dying patient. Often times, home hospice workers consists of a nurse or CNA that comes in and does all the necessary care work that has to be done. A CNA will change sheets, bathe, feed, and do light cleaning for the patient. This can often provide relief for the primary care taker. There is also facility hospice. According to the Hospice Patients Alliance (2012) hospice facilities are hospices that have their own facilities where care is provided for their patients. These facilities are often located in greater metropolitan areas, and are staffed by specially trained hospice staff that is experienced in caring for the terminally ill. In cases where a family is unable to care for their loved one at home, placement in a facility can assure that the patient receives the care needed. Home and

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facility based hospice care are the two that most people know about. However, there is also a hospital setting. Hospitals often have an entire wing of the hospital is solely dedicated to hospice care. The same type of care is provided as in a hospice facility except is located in a hospital. There are a few key differences between a hospital and facility based hospice. The main difference is the visiting hours. In a facility based hospice there are no set visiting hours. When a family wants to see their dying loved one at 3 A.M. it can be done without a problem. Whereas a hospital has a specific time set, usually from 8 A.M to 7 P.M. That is clearly not enough time for a working family to see a dying loved one. Then there is inpatient hospice. Inpatient hospices are for those who have at home hospice but need certain treatments done in a more medical setting. People with different types of hospice care settings have to have someone taking care of them. This is where the hospice team comes into play. There are many players in the hospice team that make the factory move. First there is the nurse coordinator. The nurse coordinator is the person that keeps the team together. They administer the appropriate drugs and consults with the hospice physician. The nurse coordinator also organizes team meetings to stay up to date on the patients and especially how the staff is handling the patients and themselves. Next, there is the home health aide. The home health aide has the most hands on care. They take care of the bathing, dressing, feeding, grooming, and linen changes. Home health aides seem to have the most intimate relationship with the patient because they see the patient frequently. Subsequently, the home health aides may experience the most loss because of the connection that is made with

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the patient. Then there is the social worker. The social worker has a sort of dual role in hospice care. The first role of a social worker is to evaluate the home situation. Does the patient need a special bed, a shower bar, or any other special equipment? The social worker evaluates all of those issues and makes the connections to the companies to make that happen. The second role that social workers have is the psychosocial issues. They help arrange personal affairs such as who to contact for funeral arrangements. Also, the social worker can have a hand in helping rebuild personal relationships. When a dying patient hasnt spoken with a family member for years, the social worker will often make the first call to the estranged family member and reconnect them. Finally, the social worker can provide long term care to the family after the patient has passed. Next on the team are the volunteers. The volunteers keep the patient company and may read with them, play games and most important serve as a temporary fill in for a caregiver. Often the family member(s) taking care of a dying person has other errands to do such as pay bills, food shopping, picking up medications, and just having a moment to breathe. Volunteers can offer the family a break to do these things. The next person on the hospice team is the chaplain. The chaplain is there on nondenominational terms. They are also there for spiritual support. The chaplain and social worker often work together especially in funeral arrangements and support to the family. In addition, the chaplain will help guide the dying patient only as far as they are willing to go. The chaplain is not there to convert or convince anyone to any religion, only for support. Then there is the nutritionist. The nutritionist makes

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sure that the patient is getting the correct food and that it is prepared properly. Some patients may require softer foods or more vitamin D than any other vitamins. It is the nutritionist job to make sure that is done correctly.

Next are a series of specialized therapists. First there is the physical therapist which helps patients become more mobile or have more use of certain body parts. Second are the occupational therapists. The World Federation of Occupational Therapists (2012) provides the following definition of Occupational Therapy: "Occupational therapy is as a profession concerned with promoting health and well being through engagement in occupation." Occupational therapists work with individuals who suffer from a mentally, physically, developmentally, and/or emotionally disabling condition by utilizing treatments that develop, recover, or maintain clients' activities of daily living (ADLs). The therapist helps clients not only to improve their basic motor functions and reasoning abilities, but also to compensate for permanent loss of function. The goal of occupational therapy is to help clients have independent, productive, and satisfying lives. Third on the list are massage therapist. Not all hospices have a massage therapist because of the expense. However, massage therapist can help hospice patients who cant move as much or who are extremely sore. Massages can prevent muscle spasms and prevent blood clots. Next is a speech therapist. Not all hospices have a speech therapist as well. Speech therapist of course helps patients with a variety of speech issues, but also, to help with swallowing. As the patients get closer to the end, sometimes they dont have the ability to swallow medications or food. A speech therapist can help with that. Finally, there are the music and art therapist. There is no question that music and art can help ease and heal a spirit.

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However, a lot of hospice patients dont have the mobility to pick up a guitar or a paint brush. A music therapist can play beautiful music and sing songs that the patients like. Medicaid and Medicare often cover music therapy, according to the Music Therapy Association of America. It is a very holistic approach to help relieve tension in hospice patients. Last but not least, there is the hospice physician. The hospice physician consults with the nurses to make sure everything is moving along accordingly. They also tell the nurses what drugs to administer to the patients and they serve as a consultant bases for the hospice. Lastly, the hospice physician can work with the patients primary care physician (if the patient has one) to come up with a more specialized plan for the patient. Family has a major role in hospice care especially if the patient is being taken care of at home. In an in home hospice setting there are usually one or more primary care takers. The role of the primary care taker is similar to a hospice CNA. Sometimes family has to cut back hours or completely quit their jobs to take care of a dying family member. Their lives are completely transformed during this time of hospice care. Even though there are many hospice care facilities the vast majority of care provided to hospice patients is given by informal and unpaid caregivers, who are often family members. They may be responsible for everything from management of the household and finances to medical and personal care. Providing this kind of care to a loved one at the end of life can add to increased stress, health problems, and decreased quality of life. According to Empeno and Raming (2011) Distress in caregivers has been associated with decreased caregiver self-efficacy and increased occupational and economic stress depressive distress has been associated with being the spouse of the patient. Higher levels of mortality have also been found among caregivers. There are many services and support groups where families

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are given help. However, even though support groups and other help are available to assist the primary caretakers, the caretakers often forget to take care of themselves. Taking time out for vital doctors visits to make sure their health is decent may be put on the back burner. This can also include psychological health. When the caretaker is not taking care of themselves, it can be even more detrimental to not only them but to the dying patient. Since the year 2006, there were 4,500 hospice care centers in the United States. As of 2010, according to the National Hospice Care and Palliative Organization (2012), that number rose to 5,150. Thats a 15% increase in just 4 short years. In 2006 there were 1,300,000 patients using some sort of hospice services. That number grows each year by 50,000 with the year 2010 ending with a number of 1,580,000 patients receiving palliative care. Out of the 2.5 million deaths in the United States in 2010 1.03 million were in hospice care. For 2010, NHPCO estimates that approximately 41.9% of all deaths in the United States were under the care of a hospice program. With more people going into hospice care, there has to be someone paying for it. Financial concern can be a major burden for patients and families with a terminal illness. According to the NHPCO (2012), Hospice care is covered under Medicare, Medicaid, and most private insurance plans, and patients receive hospice care regardless of ability to pay. Most hospice agencies (93.3%) have been certified by the Centers for Medicare and Medicaid Services (CMS) to provide services under the Medicare hospice benefit. In 2010, there were more than 3,500 certified hospice agencies. Congress enacted the Medicare hospice act in 1982 to make sure that the elderly are able to have hospice care without having to break the bank. In 2010,

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89% of hospice care was covered by Medicare. This means that no matter what a financial status is, or how old a patient is, you can get decent care during the last days. There are many myths about hospice care. Here are a few myths and facts about hospice care. Myth #1: Hospice is only for old people. Truth: Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care. Almost 20% of hospice patients are under 65 years of age.

Myth #2: Hospice is only for people with cancer. Truth: More than one-half of hospice patients nation-wide have diagnoses other than cancer. In urban areas, hospices serve a large number of HIV/AIDS patients. Increasingly, hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer's, cardiovascular, and neuromuscular diseases. Myth #3: Hospice is for people who don't need a high level of care. Truth: Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms Myth #4: Hospice is for people with no hope. Truth: When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back

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upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death. Myth #5: Hospice is only for people who can accept death. Truth: When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death. In conclusion, hospice care (whether at home or in a facility) is a great way for the terminally ill to spend their final days. Without the insight of Dame Cicely Saunders, modern hospice care would not be what is today. Hospice care is not a place but a philosophy that concentrates on palliative care. There are pediatric, adult, and geriatric hospices. Each section taking on difficult task, but all treatment is the same. The entire hospice care team is there to provide the most sophisticated and respectful service possible. Families are an imperative part of hospice care with one or more member being a primary care taker. They are also treated with the most sophisticated and respectful services possible. Families are given support before, during, and after the death of a loved one. It is apparent by the statistics provided by the NHPCO that hospice care is a rapidly growing care system. Within the last 4 years (as of 2010) hospice care patients have grown by 15%. Hospice care is covered by Medicare, Medicaid, and private insurance. Even without insurance, hospice care facilities will take in any terminally ill patients regardless of the ability to pay. And finally, there were a few myths about hospice care that have

HOSPICE been debunked. Each aspect of hospice care can warrant a research topic for any thriving

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graduate student. Hospice care is a wonderful place for a family to say their last goodbyes.