Running head: END OF LIFE CARE EDUCATION FOR FAMILIES 1

End of Life Care Education for Families

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End of Life Care Education for Families

End of life care is an intervention that is used to improve the quality of life for those

patients who are suffering from the chronic illnesses without any treatment option. Moreover,

this helps in relieving the symptoms including pain and offering the spiritual and psychosocial

support to patient and their families. End of life care and palliative care are used

interchangeably for the terminally ill patient who are with end of their life. Hospice is a place

that provides palliative care or end of life care to the patients with chronic and non-curable

diseases. The purpose of the hospice care is to improve the quality of life by reducing the

symptoms and relieving the pain, psychological and social distress of the patient and family.

This care can be provided at home, hospital, nursing homes, and specific hospices.

According to Zhang, Nilsson, & Prigerson, (2012), when the curative treatments are

not an option for a patient with terminal illness then the option of promoting quality of life is

taken rather than prolonging life (p.2). Coupled with this, Rome, Luminais, Bourgeois, & Blais,

(2011) had stated that though dying is a normal process still a number of patient die with pain

and distress in the hospitals and homes with chronic illnesses. Therefore, end of life care

focuses on the prevention, diagnosis, and treatment of the symptoms. Moreover, this is helping

the families to make important decisions regarding the care of the patient (p. 348). A number

of diseases are responsible for the death among patients. These diseases include cancers, end

stage kidney problems and liver diseases. When these diseases are at the end stage and no

option for cure of these are available then the focus of care is on improving the quality of the

remaining life by reducing the symptoms of distress and involvement of the families and

patients in caring process. The end of life care (palliative care) is actually important among

those patients who are in distress and having fear of death. According to Effiong & Effiong,

(2012), the focus of the end of care is to enhance the quality of life in chronically ill patients.
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Hence, end of life care is acting as effective tool to relieve the pain and other symptoms and

improve the wellbeing (p. 2).

Although, the patient is suffering from a chronic illness and suffers from end stage of

life still family is facing the same as the patient feels. Zhang, Nilsson, & Prigerson, (2012),

have explained that when there are no longer chances of cure then the physicians helps in

affecting the patients positively and significantly. The physicians and nurses reduce the

patient’s worries and encourage them by pastoral care and medical care. So, the health care

providers are not only to provide the medical care but they can also help the terminally ill

patients with spiritual, social and physical care and helping them to adjust in their remaining

life (p.6). Undoubtedly, the patients and families need support and compassion along with the

health continuum. They need support during the period from wellness to severe illness. Thus,

the families and patients with terminal illness need to be treated with full worth and dignity at

the end of their lives. Furthermore, the respect and compassion is the focus of the care at the

end of the life.

The family education regarding the end life care should include all the dimensions;

spiritual, physical, social and physical. The family should be educated that the pain and

physical suffering happens in the late life with the terminally ill patients. Thus, it is important

to relieve their pain. The family should be educated to accept the reality that patient is with

them for few days and in the remaining period of life pain should be relieved. According to

Rome, Luminais, Bourgeois, & Blais, (2011), the essential goal of medical and nursing care is

alleviation of the physical sufferings. Therefore, it is very important to know the physical

sufferings particularly the pain. Total pain is the patient’s physical, social and spiritual pain

(p.348). So, the families should be educated regarding the assessment of pain and its

management at home and hospices. Pain is a physical and social distress causing phenomenon

which terminally ill patient face.

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The families should be educated that the patient’s dignity and worth should be

considered. In hospice the patient is free to make questions and ask for the concerns. The

patient’s privacy will be maintained and patient will be allowed to express his/her feelings.

Furthermore, the patients and families should be encouraged to talk to other nurses and doctors.

Thus, the questions of the patients and families about the illnesses should be answered and the

plans should be discussed with them.

The family should be educated about the decision making about organ donation and

proper communication. The families should be educated about the communication with the

health care providers and decisions about their medical care. According to Cauldwell & Stone,

(2015), the communication between the patient, family and health care providers who is dying

is sensitive. Furthermore, the persons who are dying should be involved in the treatment and

care process (p.97). Coupled with this, Buchman, (2012) has explained that communication is

a central way to have a good patient care. However, this needs extra care and efforts in the

communication process (p.115). Therefore, the families should be educated about the ways of

communication with the health care providers, social workers and the importance of the

communication in end of life care process.

Dying patient is having right to make decisions about organ donation. Organ donation

is a sensitive issue. However, the families should be educated to help the patient in making

these decisions. It is not uncommon that the patients and families collaboratively make

decisions about their useful organs donation after their death. The patient has a right for organ

donation and this right is with the patient and family. The patient should make decision about

organs donation. Family should be educated about the importance of patient’s organ and its

usage after death with the other people. Therefore, any discussion and decision about the organ

donation should be in honoring and respect of the patient. The families should be addressed

about the answering of the questions properly.

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According to Davison, the family and patients need enhanced education regarding end

of life care issues. Thus, they preferred on decreasing the issues of pain and physical suffering.

Additionally, the most of the patient like to die in the hospices and houses. Thus, the importance

of education for family and patient increases (2010). The family should be educated about the

social and spiritual care at the hospices. The end of life care at hospice needs education at a

higher level. The patient needs religious music, books and pastoral approach at the end of life.

The religious and spiritual help should be provided to the terminally ill patients at the hospices.

Numerous studies have provided the evidences that end of life care includes the education

related to the pain and distress symptoms. Moreover, the effective communication and its

proper use in the treatment and to attain the sense of completion.

Furthermore, the social factors are also important for the education of the family. The

patient needs full social and spiritual support at the hospices. The family needs education about

the importance of social support. The social support provides psychological support as well.

The patients will need some home items like photographs and other previous items which will

help in promotion of comfort and decreasing the distress. As the patient gets near to the death

the emotions of aggression and fear increases. Thus, the family should get involved in the

process of expressions of feelings. The expression of feelings is highly needed to be heard by

the family and other health care professionals. Additionally, the feelings should be listened

properly and carefully because these will help the family to offer the care modalities to them.

Psychologically, the patients with the terminal illness feel depressed and stressed because of

their near death. The depression and stress needs to be decreased and the proper education of

the family helps in this process. Proper communication and education should be given to the

family regarding end of life.

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In nut shell, the end of life is an important issue that is faced by all the terminally ill

patients. The end of life care is also named as palliative care. The end of life care is burdensome

for the families both financially and socially. The patient and family both suffer physically,

socially emotionally and psychologically due to terminal illnesses and end of life. The

education plays important role in the process of end life care. The patients used to remain in

the homes for the last days of life. However, most of the people suffer from emotional distress

and physical pain.

The physical pain is the most important factor that brings suffering and distress among

the families. Therefore, the families should be educated to decrease this pain. Moreover, the

psychological and social support should be provided with proper communication and

education. Furthermore, the proper provision of the home items like photographs and allowing

the patients to express their feelings. Thus, the family education is important at all levels in the

end of life care.

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References

Buchman, S. (2012). Teaching end-of-life care in the home. Canadian Family

Physician, 58(1), 114-116. Retrieved from

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264027/

Cauldwell, K., & Stone, P. (2015). The changing nature of end of life care. Indian Journal

of Medical and Paediatric Oncology, 36(2), 94. doi:10.4103/0971-5851.158836

Davison, S. N. (2010). End-of-Life Care Preferences and Needs: Perceptions of Patients

with Chronic Kidney Disease. Clinical Journal of the American Society of

Nephrology, 5(2), 195-204. doi:10.2215/cjn.05960809

Effiong, A., & Effiong, A. I. (2012). Palliative care for the management of chronic illness:

a systematic review study protocol. BMJ Open, 2(3), 1-7. doi:10.1136/bmjopen-

2012-000899

Rome, R. B., Luminais, H. H., Bourgeois, D. A., & Blais, C. M. (2011). The Role of

Palliative Care at the End of Life. The Ochsner Journal, 11, 348-352. Retrieved

from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241069/pdf/i1524-5012-

11-4-348

Zhang, B., Nilsson, M. E., & Prigerson, H. G. (2012). Factors Important to Patients'

Quality of Life at the End of Life. Archives of Internal Medicine, 172(15), 1-21.

doi:10.1001/archinternmed.2012.2364
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