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END OF LIFE CARE EDUCATION FOR FAMILIES 2
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.
END OF LIFE CARE EDUCATION FOR FAMILIES 3
Hence, end of life care is acting as effective tool to relieve the pain and other symptoms and
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
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
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
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
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
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
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
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
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
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
References
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264027/
Cauldwell, K., & Stone, P. (2015). The changing nature of end of life care. Indian Journal
Effiong, A., & Effiong, A. I. (2012). Palliative care for the management of chronic illness:
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
END OF LIFE CARE EDUCATION FOR FAMILIES 8