Running head: HOSPICE CARE 1

Hospice Care

Sheila Mahaney

Ferris State University

English

321

Rick Amidon

April 25, 2013

HOSPICE CARE

Table of Contents

Abstract............................................................................................................................................3

What is Hospice…………………………………………………………………………………...4

Origins of Hospice………………………………………………………………………………...4

Expansions of Services Today…………………………………………………………………….5

Palliative Care…………………………………………………………………………………….5

Who Benefits from Hospice………………………………………………………………………6

Where Does Hospice Exist……………………………………………………………………….9

Kinds of Support Given………………………………………………………………………….10

Education………………………………………………………………………………………...11

Conclusion……………………………………………………………………………………….13

Glossary………………………………………………………………………………………….14

References......................................................................................................................................15

Appendix A………………………………………………………………………………………………………………………………16

HOSPICE CARE

Abstract

This paper explores the definition of palliative care and how it relates to the philosophy of

hospice care. It encompasses what hospice is, who utilizes the services and what is taught by

hospice. It details the importance of education and communication in the realm of hospice to the

patients that are dying and in support of their families. The need for compassion and empathy in

caring for patients and maintaining dignity is seen throughout the paper.

HOSPICE CARE

Hospice Care

Hospice nursing has always piqued my curiosity and has intrigued me. My family has

used the services of hospice in the past and currently using their services. Three years ago my

grandmother was dying and our family made the decision to have her go to a hospice home

rather than remain in the hospital. It’s never easy to watch our loved one suffer. Hospice

provided compassion, empathy and a great support network for the family and patient that will

always be remembered. Since that time, I have wanted to gain more knowledge and

understanding about the philosophy of hospice.

What is Hospice?

Hospice is from the Latin word “hospes”: Hospice stands for kindness, generosity and

overall hospitality. It’s a supportive and caring environment designed to decrease the suffering

by making them feel comfortable and at home in their new surroundings before they die.

In Medieval times the hospitals or hospices were run by religious orders. They wanted to

serve their Lord by providing a sanctuary for the sick and those in need of shelter. If the

religious order found that there was mistreatment or cruelty, punishment was severe

(Buckingham pg. 41).

Origin of Hospice

The concept of Hospice originated in Europe. Cecily Saunders opened the first hospice

home in 1967. She started her career as a social worker and then expanded into nursing and later

became a doctor. She believed there was a great need for the sick and poor during that time in

the late 1960’s. She developed a friendship with a gentleman who was dying of cancer. They

both had a passion for aiding the sick and meeting the needs of the dying. Both wanted to make

sure that patients had peace and dignity in their death. When the gentlemen died, he donated his

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money to Ms. Saunders, and she developed the concept of hospice and opened up Saint

Christopher’s Hospice in London. Ms. Saunders hoped to meet the needs of the people of

Europe (Buckingham, R, 1996). Elizabeth Kubler Ross was also instrumental in developing the

philosophy of hospice. Ms. Kubler Ross wanted to address the psychosocial needs of people.

Hospice was then introduced to America in the early 1970’s. New Haven, Connecticut

would be the first of many hospices in the years to come. With the work of Saunders and Kubler

the concept of meeting the needs of people suffering was developed. Today there are many

families that have been touched by hospice.

Expansions of Services for Hospice Programs Today

Hospice has grown considerably from just being in a one or two room house to 18-20

room homes. Hospice care is seen in homes, nursing homes and hospitals. Hospice is known for

the holistic approach for the patients and families. Education is an important part of the hospice

experience. The hospice caregivers care for the patients, as well as the families. The process

goes beyond the death of the patients. The families are often offered followed up care after the

death of their loved ones.

Palliative Care

Another aspect of the death and dying needs of patients and families is being met through

the concept of palliative Care. Palliative care is “directed at identifying and treating pain and

other symptoms in acute care settings for patients who are experiencing life threating and or

chronic diseases”(Hunter-Johnson, 2012). The goal is to alleviate symptoms and improve

overall treatment. Another definition of palliative care is prevention and relief of suffering

therefore: supporting the quality of life for the patients and their families (Nebel, 2011). The care

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that is given to the patient and families centers on a team approach. The teams consist of

doctors, nurses and social workers. (Neeley, 2009).

Who Benefits from Hospice

Who benefits from hospice? Both the family and the patient do. The philosophy of

hospice is to have an open communication when talking with everyone involved about the death

of a loved one. This is a difficult concept to understand and to put into practice. Many families

express avoidance and or denial. Families are scared and don’t know how to handle this crisis in

their lives. The expectations of families are that the hospice staff will communicate with them

and tell them what their loved one will experience. “Family caregivers often rely on clinicians to

initiate family discussions about hospice and care of the dying. Mortality communication, or talk

between terminally ill patients and family about impending death is encouraged in

hospice”(Wittenberg, Goldsmith, Dermis, et al, 2012).

Family dynamics come to play when there is an impending death in the family. Each

family is unique in dealing with these circumstances. Some families have an open

communication and talk freely about the death and other families avoid talking about it or tip toe

around the subject with themselves and other family members. Clinicians need to educate and

prepare the families for impending death, by providing coping mechanisms they will need. This

is a new concept for clinicians and the resources are limited. The clinicians need to assess,

observe and evaluate how the family is processing the situation and meet the needs as they

become evident. Communication is the key in helping families. There are many families that do

not know what is expected or even how to ask for help or the questions that needs to be asked

(Wittenberg, 2012). The vision of today’s National Hospice and Palliative Organization

“specifically refers to the family’s role as helping the patient die pain-free and with dignity,

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asserting that families will receive any necessary support to allow patients to do so”(Nobel,

2011). Communication between the caregivers and families relieves the stress and anxiety that

they have during this crisis.

The patient or client that is dying also benefits from hospice care. Hospice philosophy is

that it involves the patient and family. The care that the nursing staff gives to the patient is

individualized. The nurse needs to meet the needs of the patient in more than just one area.

They meet the physical needs by making sure their pain is tolerable and in control. One way this

is done is by pre-medication prior to the pain surfacing. Pain makes patients fearful and causes

anxiety, so giving them pain meds prior to that eases the discomfort and decreases the anxiety

the patient may be experiencing. The care that the nursing staff gives is focused on symptom

control. Treatments are done so that side effects can be minimized. Each treatment is

individualized for the patient that is being cared for. There is continuous evaluation of the care

of the patient. Besides handling the pain control that the patient experiences the staff also makes

sure that the patients does not develop bedsores. This is accomplished by frequent position

changes and using aids such as sheep-skin pads. Meticulous oral care is done so that the patients

do not develop infection or sores in their mouth (Buckingham pgs. 68-9). Providing this care

ensures for the patient is receiving the dignity and respect they deserve.

Adults primarily are using hospice care with the average age being 65-70. Adults

developmentally understand the concept of dying and when given a diagnosis of being terminally

ill, they actively participate in the care they receive. They are able to make informed decisions

and can plan with their family and still be in control of their surroundings. Adults generally have

Medicare and hospice care is a covered benefit for most.

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Children, in contrast are different. Most, do not qualify for Medicare and the situations

may be much more stressful. Developmentally, children may not understand the dynamics of

dying. There are many barriers to caring for children who may need hospice care. Pediatric

patients unfortunately still become sick and may have a terminal illness. Our society has a hard

time thinking about kids and having them die at an early age. This causes discomfort, anxiety

and a silence regarding the care that the children receive. The Journal of Hospice and Palliative

Nursing suggests that there is a need for continued education in the area of pediatric pain and

management of their symptoms. Communication skills are difficult based on the various ages of

the children, and therefore exacerbating the level of stress that is on the nursing staff. “The

nursing staff feels inadequate to deal with dying children and 50% of nurses report feeling

unqualified to manage pediatric pain and the symptoms” (Neeley, 2009). Along with nurses,

oncologists have minimal experience or training in handling pediatric pain management. Dr

Morris Green states, “There are few human experiences so shattering as a child’s death”

(Buckingham, pg. 121). Hospice needs to recognize and acknowledge the fact that children die

and need to be proactive in teaching their staff accordingly.

Communication is vital in handling children with terminal illnesses. Children are not

able to conceptualize the concept of death and dying, but they are aware of their surroundings.

They use verbal and non-verbal cues to know that something isn’t right. A study conduced in

Switzerland, showed children were able to draw out their feelings, so even without verbalization,

their thoughts can be valued (Buckingham, pg. 120). Care for terminally ill pediatric patients,

needs to provide continuous and constant emotional and psychological support, and, evaluate its

effectiveness. Parents and siblings also need to be in the loop. The family needs to know its

okay to ask questions. Establishing a trusting and open relationship with the family and child is

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vital to the well being of those involved. Often children may feel they did something bad and

it’s their fault they are sick. They need to be assured that they are not bad and encouraged to ask

questions if they are able to. The question often comes “What and how do I tell my child they are

dying?” Let the children guide the conversations, and ask the questions. Parents can then answer

accordingly. Maintaining a positive approach is important. “The child responds much more to

how something is said than to what is said”(Buckingham, pgs. 125-126).

Where does Hospice exist?

Hospice is a service and it is seen in different settings. Hospice care can be provided in

private homes, hospitals, nursing homes and hospice homes. A referral needs to be formally

obtained from a physician, such as an oncologist or social worker. Talking to an admission nurse

from Spectrum Health Hospice, she stated that family could also request a referral for their loved

one (A. Stone, personal communication, April 10, 2013). Once the referral is made, the

admission nurse goes to visit the patient. The admission nurses are the first person from hospice

that the family will see, following their care and providing the family with support and

availability during their decision-making.

Once a client or patient decides to use the hospice service, a team is assigned to the

patient. The case management team consists of a registered nurse, physician, social worker, aide

and possible Chaplin to care for the patient’s needs. Continuity of care is given during the

hospice service. Where a patient will receive hospice care is individualized to that person. Abby

Stone, RN, admissions nurse, stated that 85% of clients choose to die at home ( A. Stone,

personal communication, April 10, 2013). Home is a source of comfort and familiar

surroundings. When a client has hospice at home, there is a minimum of one visit per week from

the nurse to assess and evaluate the surroundings. The social worker comes a minimum of once a

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month to assess and evaluate the needs of the patient and family. They have one primary nurse,

social worker and physician that comes and 24/7 on call service, as needed. The hospice service

provides planning for all the equipment and medications that are needed in the home.

If the client is in the hospital and chooses to receive care at home for hospice, the

transition can be daunting for the family and client. The goal is to make the transition as smooth

as possible. Equipping the family with information about dosages of medications and side

effects of those medications is crucial to the care of the patient. The key is open communication.

The family expects the hospice team to effectively communicate this information (Dose, Rhudy,

Holland, Olson, 2011). Families take a new role as care givers for their loved ones and may feel

inadequate and need support and encouragement. Giving the families expectations help them

know what their roles are and can plan accordingly. Dying at home gives the patients a feeling of

dignity in death. Knowing that help is just a phone call away is reassuring to everyone involved.

If the client chooses to remain in the hospital or nursing home for their hospice care, the

same care is available to them. The care these patients receive is comfort or palliative care only.

If the staff at the hospital or nursing home have a concern or question, they contact the hospice

nurse that is on call or available to them. Another choice is going to a hospice home. These are

stand-alone facilities and provide 24/7 care for the patients and families. Those clients that need

extensive care or are deteriorating quickly may choose this option. The emotional support

continues for the families and the client.

Kinds of Support Provided

Hospice provides the family with a multitude of support systems. It extends beyond the

physical care of the patient. It’s a holistic approach. The hospice team becomes like a second

family to the client and their family. Some of the services provided include, emotional support

HOSPICE CARE 11

and just listening and getting to know the client. Laughter and crying with families are

therapeutic means of understanding or dealing with the death of a loved one. Spiritual support is

also available if needed by offering the services of a Chaplin. After the loved one dies, a

bereavement service is given. Hospice follows up with families about a month after the loss and

then three to six months after the loss and continues with follow up care for a year after the

death. Their philosophy is that everyone grieves differently and in their own time. Experiencing

grief is part of the grieving process, but it doesn’t have to be done alone. Hospice grieves with

families and helps them through this difficult process of death and dying. Some hospices may

offer grief seminars or support groups. The Hospice House in Holland, Michigan offers support

groups for children and teenagers in the loss of a parent or other family member. Camps are

designed to help children manage their grief. In addition to that they offer writing support

classes, where people can express their loss and grief and share stories about there loved one

through words.

Education

Education of what to expect for families is very important to hospice. The family needs

to be equipped with knowledge about what hospice is and what the expectations are, as

caregivers for there loved one. They are taught that grieving is difficult and a natural part of the

healing process and that each individual grieves differently.

Families who choose to use the Hospice House in Holland are given an informational

booklet explaining the death of their loved one. The booklet entails the care that the patient will

receive in the end of life stages in the dying process. “Hospice has a long-standing history of

providing ‘gold-standard’ care for dying and their families”(Sigrist, 2006).

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Continuing education and learning seminars for the staff and caregivers, is also

important. Knowing how to deliver palliative care and deliver the appropriate support for the

patient and families is very important in caring for dying patients. Educating the physicians and

the nurses in caring for pediatric patients is extremely important. As stated earlier there are

many that do not feel adequate in caring for children that are dying. The education should

include not only managing the physical needs, but also the emotional and psychological needs of

the families and patients. Specific programs are now available to provide training for the End of

Life Care in the Pediatric Patient. Many hospital programs are requiring their staff to attend or

be certified in these in these programs as part of identifying this as a need.

Education of the hospice philosophy can be taught by using an interdisciplinary

approach. This approach focuses on developing competencies on palliative care and utilizing

many different disciplines in giving the best end of life care. Being part of a team can bring

many opportunities for growth and learning. Gaining knowledge and learning new experiences

can facilitate a new awareness of current topics or trends that are being used in the hospice arena.

One of the initial challenges for health care professionals is realizing, they are not in

control. Teaching autonomy and advocacy for the patients is vital in the approach of care that is

given for patients. The patient is an integral part of the “team” that is caring for the hospice

patient. It is important to teach the patients to identify their needs and goals, so the best care can

be provided for them.

Teaching of the core hospice philosophy, core values and mission is important in

understanding of the way hospice works. “Research shows that it takes approximately 18-24

months of practice in hospice to become fully comfortable, competent, effective, and efficient

and practice with a healthy balance between work and one’s personal life” (Egan, Abbott, 2002).

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Learning from other disciplines, by observing or shadowing can provide optimal training

and result in greater knowledge in caring and understanding the hospice philosophy (Egan,

2002). It’s important for caregivers to be empathic to the needs and desires of their patients.

Listening to their stories and experiences can be beneficial to providing the best quality care.

Conclusion

Hospice is a unique and a special kind of nursing and philosophy. The main goal is

treating the patient with compassion, empathy and respect. Providing dignity and comfort to

patients in their last stage of life is a high priority in the care that they give. Support to the

family is also very instrumental in the care given to the hospice patient. Communication and

education in teaching families is very helpful in the emotional care that is extended. The

families feel like they are being taken care of by experts and know that their questions will be

answered. Hospice is a great organization and the core values they exude are exceptional. They

provide for the needs of the dying patient in a way that can be expressed only with a hand held or

a tear dried. Families, like mine, will forever be grateful that Ms. Saunders struck up a

friendship with a dying man to bring dignity to those in need.

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Glossary

Holistic care: Care that centers on the whole person and family. Doesn’t just treat a disease

Hospice: A service that is provided for those who have a terminal illness such as cancer

Interdisciplinary team: These teams consist of a variety of experts from different modalities from

nursing, physicians, social workers, physical therapist, occupational therapist, speech therapist,

registered dietitians and chaplains.

National Hospice and Palliative Care Organization: this organization provides information and

does research on Palliative care.

Palliative care: Comfort measure that are given for the patient who is dying. They will not

prolong death, just help decrease the patient symptoms

Oncologist: – a physician who treats patients that have cancer

Sheepskin pads- a soft and cushioned pad used for patients in helping to prevent bedsores

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References

Buckingham, R. W. (1996). The Handbook of Hospice Care. Amerest, New York: Prometheus

Books.

Dose, A. M., Rhudy, L. M., Holland, D. E., & Olson, M. E. (2011). The Experience of Transition

from Hospital to Home Hospice: Unexpected Disruption. Journal of Hospice and

Palliative Nursing, 13, 394-401. Retrieved from PubMed

Egan, K. A., & Abbott, P. (2002). Interdisciplinary Team Training: Preparing New Employees

for the Specialty of Hospice and Palliative Care. Journal of Hospice and Palliative

Nursing, 4, 161-171. Retrieved from PubMed

Hunter- Johnson, L. (2012). Palliative Care Nursing. Nevada RNformation. Retrieved from

Nebel, S. (2011). Facing Death Together: Exploring the Conceptualizations of Hospice Patients

and Family as a Single Unit of Care. Journal of Hospice and Palliative Nursing, 13, 419-

424, Retrieved from PubMed

Neeley, S. M. (2009). Barriers to Pediatric Hospice Care. Journal of Hospice and Palliative

Nursing, 11, 8-9. Retrieved from PubMed

Sigrist, D. (2006). Journey’s End A Guide to Understanding the Final Stages of the Dying

Process. Rochester, New York: Lifetime Care/ Hospice.

Wittenberg- Lyles, E., Goldsmith, J., Demiris, G., Oliver, D. P., & Stone, J. (2012). The Impact

of Family Communication Patterns on Hospice Family Caregivers: A New Typology.

Journal of Hospice and Palliative Nursing, 14, 25-33. Retrieved from PubMed

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Appendix A

Here are three people who have read my paper and gave comments on the paper

I reviewed Sheila's research paper on Hospice Care.  I thought the paper was well written and

gave the audience a great insight into Hospice and the wonderful care they provide for patients.

The topics presented flowed easily throughout your paper and followed the table of contents.

The format of your paper was clear and concise and easy for the reader to understand.  I have had

personal experiences with Hospice as a healthcare provider and with a family member.  I am

more enlightened on this topic and will share this information to my family, friends, and patients.

Thank you for sharing this information.

Kimberly McPike, RN

I have read Sheila Mahaney’s research paper on Hospice. I feel that she did an

exceptional job at describing Hospice and the care they provide. She relates how Hospice is

needed in today’s healthcare and how it is beneficial to the patient and families. When I read her

paper, I felt it was easy to read, informative and flowed nicely. Diana VanRhee 4/21/2013.

Jamie Vanderkolk

Summary

Hospice Care

Written per Sheila Mahaney

The Hospice Care research paper was written in regards to something we may all or already have

encountered in our lives, the death of a loved one through cancer. It is interesting to understand

the origin of the Latin word Hospice being “hopes” a word meaning kindness, generosity and

HOSPICE CARE 17

overall hospitality. Throughout the research done, it is evident that was the intent of Cecily

Saunders when she conceptualized her first home in 1967. You can clearly understand how Ms.

Saunders, along with her cohort Elizabeth Kubler Ross, wanted to develop a place where patients

were not only given great physical care but their emotional and spiritual needs were met as well.

Through the use of palliative care patients are kept comfortable during their last days. Hospice

also benefits the families that are involved with caring for their loved ones and the emotional

needs they may have. All families have different communication styles; Hospice care helps to

bridge the gap between those family members. One beautiful thing about Hospice is being able

to help people who have loved ones in different age groups. Some may be suffering from a child

dying, while others it may be a grandparent. Hospice has different ways to accommodate those

who are at the end of their life. Patients may be in their own home or a facility that hospice owns

and operates. A social worker, physician and RN who collaborate with the family to create a

plan of care oversee the care of a patient. Overall Hospice is a remarkable organization that

helps patients and their loved ones with the difficult end of life attention that having cancer

entails.

Carol A. Fuller, RN, BSN, MBA Director, Women and Children’s Services @ Sparrow Hospital

reviewed my paper and gave me suggestions and feedback on Hospice Care.