End-of-Life Care and Nurse's Roles

End of Life Care, Nursing, Roles

Nacak and Erden.

ABSTRACT

Every individual who opens his/her eyes to life at birth closes eyes to death at the end of life. Every individual

who is in the process of death wants to spend the last periods of his life as free from pain as possible, in

a digniﬁed and peaceful way. End-of-life care is provided by nurses, which aims to alleviate the suering of

individuals in the dying process and to provide patients with a good death experience. The continuation of

treatment-oriented practices in the end-of-life period causes the inability to provide end-of-life care and

patients suer from unnecessary practices. Nurses who are in one-to-one contact with patients have impor-

tant roles in making the decision to switch to end-of-life care and in providing end-of-life care to patients. In

the present article, the concept of end-of-life care is examined, the dierence between end-of-life care and

palliative care, which are often confused, is discussed, and the purpose of end-of-life care and its importance

for patients are emphasized. The roles and responsibilities of nurses in end-of-life care are also highlighted.

It has been discussed that the roles of nurses are very important in the transition from treatment-oriented

care to comfort-oriented end-of-life care, providing eective end-of-life care, and patients experiencing a

good death with dignity.

Keywords: Nursing, nursing roles, palliative care, end-of-life care

Introduction

It is a fact that death, which is an inevitable reality, will be experienced by every individual. Every

individual wants to complete the death process with dignity, free from pain, fulﬁlling their last

wishes, and receiving the support of their loved ones.

End-of-life care aims to relieve the pain of

the individual in the death process and provide a digniﬁed death experience from the moment

when the curative treatment no longer brings any beneﬁt.

2,3

However, end-of-life care cannot be

provided to patients because of the treatment practices that prolong life for a certain time and

do not cure the patient, and patients suer from unnecessary routine practices in the last stages

of life.

4-6

Patients who spend the last period of their lives in pain cannot say goodbye to their

families, fulﬁll their last wishes, and maintain their autonomy.

1,7,8

Patients prefer a few pain-free

days, in other words, end-of-life care, instead of prolonging their lives with pain.

Nurses are the

primary providers of end-of-life care in their professional roles

because nurses are the individu-

als who stay with the patients for the longest time and are in one-to-one contact with them, are

the ﬁrst to observe that the patient does not respond to the treatment, see the preferences

of the patient and the family, bring together the whole healthcare team, family and patient, and

interpret and convey what they see correctly in line with their professional knowledge.

10,11

In this

way, nurses can guide the transition from treatment-oriented to comfort-oriented care with

their roles as care managers and decision-makers,

protect the rights of patients in the death

process with the role of patient advocacy,

and provide the necessary care and help patients and

their family with their roles as an end-of-life care practitioner. At this point, it is required that

nurses understand end-of-life care, distinguish between the aims of end-of-life care and pallia-

tive care, know the dierence between patient groups in the 2 types of care, and be aware of

the importance of end-of-life care for patients and their nursing roles and responsibilities in the

end-of-life period.

End-of-Life Care and Nurse’s Roles

UlviyeAydan Nacak , Yasemin Erden

Eurasian J Med 2022; 54(Suppl. 1): S141-S144

Cite this article as: Nacak UA, Erden Y.

End-of-life care and nurse’s roles. Eurasian J Med.,

2022;54(Suppl. 1):S141-S144.

Department of Nursing, Erzurum Teknik

University Faculty of Health Sciences, ,

Erzurum, Turkey

Received: October 2 2022

Accepted: November 30, 2022

Publication Date: December 1, 2022

Corresponding author: Yasemin Erden

E-mail: [email protected]

DOI 10.5152/eurasianjmed.2022.22324

Review

Palliative Medicine

Content of this journal is licensed under a Creative

Commons Attribution 4.0 International License.

S142 • Nacak and Erden. End of Life Care, Nursing, Roles Eurasian J Med 2022; 54(Suppl. 1): S141-S144

End-of-Life Care

Life and death are mutually complementary

concepts that cannot be considered separately.

Death is as real as life and a part of human

life. The last unpreventable and fateful act of

humans is death. When it is accepted that death,

which is an inevitable end, is very close for the

patient,

end-of-life care is provided to patients

until the last days and hours of life.

This care

protects the dignity of people through words

and behaviors, helps people cope with their

physical limitations, and protects and honors

dying individuals.

The purpose of this care is not

to prolong life but to prevent or alleviate pain

as much as possible while respecting the dying

individual’s wishes. The focus of end-of-life care

is to increase the individuals’ quality of life and

ensure that they experience an honorable and

peaceful death.

2,6,15,16

Palliative, Hospice, and End-of-Life

Care

Palliative care, hospice care, and end-of-life care

are similar but not the same, often used inter-

changeably, and can be confused.

Knowing and

understanding the purposes of these types of

care will make it easier to understand end-of-

life care.

Palliative care is patient- and family-centered

care optimizing the quality of life by anticipating,

preventing, and treating the individuals’ suer-

ing because of their diseases. This care includes

evaluating the physical, intellectual, emotional,

social, and spiritual needs throughout the dis-

ease and supporting the individuals’ autonomy,

providing the necessary information support,

and assisting in care and treatment choices.

Palliative care is similar but not the same as end-

of-life care. In palliative care, an individual with a

life-threatening disease has a chance of recovery

and the care provided with medical treatment

is eective. Palliative care often focuses on the

pain, symptoms, and stress of serious diseases

in addition to curative care methods. Also, the

individual provided with palliative care does not

need to be in the end-of-life period, and every

individual who has a serious disease can receive

palliative care, regardless of the prognosis of the

disease.

Hospice care is an end-of-life care model pro-

vided in private residences or institutions.

Hospice care, which is accepted as a comfort-

oriented care model, provided a compassionate

approach for individuals who face a serious or

life-limiting disease or injury, is based on alleviat-

ing the pain and suering as much as possible

while providing moral and emotional support

suitable for the individual’s particular needs and

wishes. Support is also provided to individuals’

relatives. Curative treatment is ineective in

hospice care and the focus is on providing more

care. In most cases, care is provided in the indi-

viduals’ private residences but can also be pro-

vided in independent hospice facilities, hospitals,

nursing homes, or other long-term care facilities.

This care is also provided for patients who have

a terminal prognosis and a life expectancy of less

than 6 months.

End-of-life care and palliative care are 2 types of

care that are similar but have dierent purposes.

Although patients do not respond to treatment

in end-of-life care, they can improve in palliative

care. Although the purpose of end-of-life care

is to relieve the patient’s pain during the death

process and to ensure an honorable death, the

purpose of palliative care is to provide symp-

tom control. Hospice care is the care provided

to patients by healthcare professionals, mostly

in paid institutions. End-of-life care can be pro-

vided in the last step of palliative care or hos-

pice institution within hospice care. However,

end-of-life care is not a type of care that can be

given only in palliative wards or in hospice insti-

tutions in the ﬁnal stages of patients. It must be

provided to every individual who needs end-of-

life care during the death process, regardless of

where they are (i.e., home, intensive care units,

palliative ward of an institution or hospital, etc.)

because every individual deserves to die with

dignity and peace in the death process.

The Importance of End-of-Life Care

for Patients

Every individual knows that s/he will experience

death one day. However, despite this, people are

afraid of death and diseases that they think are

deadly and want to run away from.

18,19

Ignoring

the relationship that exists between life and

death, death has mostly been considered some-

thing frightening and isolated from life. People

who had terminal illnesses were abandoned

in hospitals and intensive care units, and death

was considered the end of everything such

individuals were left to their loneliness and

fate.

Patients who are diagnosed with terminal

diseases and their families were distanced, their

questions were left unanswered, and routine

treatment practices took the place of care.

4,21

But the dying patient must be cared for as a

unique individual who deserves respect instead

of a case in which unnecessary diagnosis or use-

less treatments are tried.

Optimum end-of-life care must be given, regard-

less of age, conditions, and medical diagnosis to

ensure that the dying patient can lead a high-

quality and digniﬁed life until the last moment

of life.

End-of-life care is based on ensuring the

control of patients’ pain and symptoms,

as well

as maintaining their optimum well-being, reduc-

ing physical dependence as much as possible,

reducing their physical dependence, creating

an environment where they can spend quality

time with their families and loved ones, and sup-

porting them in ﬁnishing their unﬁnished busi-

nesses.

When end-of-life care is not provided,

the patient is aected negatively in many ways.

Failure in providing eective end-of-life care,

and especially pain management, may cause the

patient to feel hopeless and withdrawn from all

aspects of life, physically weak, and unable to

decide on the treatment and care because of

the decreased understanding.

End-of-life care aims to reduce the dying indi-

viduals’ pain as much as possible. When end-

of-life care is not provided to individuals, their

pain will increase and they will feel physically

tired because routine treatment and diagnostic

practices continue. This can lead to a decrease

in the patient’s energy and clarity of thought.

Individuals who have reduced clarity of thought

cannot decide on their own care and treatment.

Individuals who are not allowed to determine

the end of their own life or who cannot make

their own decisions have less self-esteem, but

protecting and honoring their autonomy is one

of the basic principles of end-of-life care.

25,26

The

inability of healthcare professionals to explain to

patients and their families about life-sustaining

treatments also causes the individuals’ will to be

ignored, and therefore, they have to continue to

receive treatment-oriented care and suer, even

if they do not want it. End-of-life patients pre-

fer comfort-oriented care (end-of-life care), in

other words, they want that their pain reduced

and sleep problems to be eliminated, rather than

treatment-oriented care. Patients also say that

they want to quit their lives in an environment

where their dignity is supported, their prefer-

ences are respected, they are approached with

compassion and they feel valued, and they want

to live 2 days without pain rather than 2 years

Main Points

• End-of-life care is a holistic process that includes

the needs of both patients and their families.

• In this process, all the needs of the patient and

their families should be evaluated holistically.

• Nurses’ knowledge and skills are important in the

care of individuals and families in the end-of-life

period.

• By displaying professional roles and attitudes,

nurses can ensure that the patient ends his life

in a hopeful environment where he is honored,

respected, and surrounded by loved ones with

end-of-life care.

Eurasian J Med 2022; 54(Suppl. 1): S141-S144 Nacak and Erden. End of Life Care, Nursing, Roles • S143

of suering.

Supporting patients to make end-

stage treatment and care decisions is important

in protecting their dignity and autonomy.

Maintaining the individuals’ autonomy in end-of-

life care is not only limited to their participation

in their own care and treatment decisions but

also includes supporting them in daily life activi-

ties, being able to actively prepare for death,

contributing to other individuals with their

experiences, and allowing them to say goodbye

to their loved ones.

27-29

End-of-life care is essential for patients to expe-

rience a well-deserved dignity and a peaceful

death that is as pain-free as possible. Failure

to provide eective end-of-life care deprives

patients of a well-deserved and respectable

death experience, increases their suering,

damages their autonomy, lowers their quality of

life, damages dignity, and does not allow them to

say goodbye to their loved ones for the last time.

End-of-life care is also a process that includes

the family of the patient. One of the aims of

end-of-life care is to maximize the quality of life

of the patient's family. With the correct deter-

mination of the needs of the family of the dying

individual and the planning and implementation

of nursing interventions for these needs, holistic

care will be provided to the dying patient.

Roles of Nurses in End-of-Life Care

Nurses are at the forefront of the care provided

to patients nearing the end of their lives and

their families.

30-32

Nurses have very important

roles and responsibilities toward patients and

their families in the care of dying patients.

30,33-35

Nursing practices are very important in provid-

ing the care that dying patients need in their

search for a comfortable and digniﬁed death.

Nurses also have a unique place in the transition

and provision of end-of-life care because nurses

take care of patients and follow them, and they

can observe that the patient does not respond

to the treatment applied, but the patient suers

from pain as a result of the interventions. With

these observations and knowledge, the nurse

is the ﬁrst person to realize that the patient

needs end-of-life care. Nurses can transfer their

observations and knowledge to other healthcare

professionals and, together with the healthcare

team, take an active part in the decision-making

processes that reﬂect the patients’ physiological

realities, preferences, and what can and can-

not be done clinically, with their nursing roles,

enabling the transition to end-of-life care.

Nurses’ responsibilities and what they can do

in the transition to end-of-life care in line with

their nursing roles are as follows. In line with

their manager role, nurses must cooperate

with the family and health team to determine

and verify the best treatment and care.

11,37

However, nurses must also be able to take part

in the caregiving process as the manager of the

care by using their knowledge. As the man-

ager of the care provided, the nurse must be

able to take an active role in ensuring that the

patient receives comfort-oriented care instead

of treatment-oriented care, in other words,

transition to end-of-life care.

In line with

their decision-making role, nurses must bring

together all the people and stakeholders in the

process of making the end-of-life care deci-

sion, share information about the patient and

family, and ensure their comfort.

The nurse

must take part in the decision-making process

of transitioning to end-of-life care by helping

patients and families understand what they feel

and by questioning the treatment decisions that

may cause the suering of patients, by consid-

ering their rights, interests, and preferences.

As a result, in the process of transitioning to

end-of-life care and making its decision, nurses

can direct the care in line with their role as the

managers of the care provided, enabling the

patient and family to choose their own care

and make decisions in line with their decision-

making roles, and defend the rights of the dying

patient with the role of patient advocacy. When

it is decided to switch to end-of-life care, nurses

provide comprehensive, honorable, and com-

passionate end-of-life care to patients in line

with their roles as a practitioner

1,38

and sup-

port patient relatives.

In this process, nurses

must ensure optimum pain management of the

patient with end-of-life care

and must protect

patients and their families in terms of spiritual

aspect and knowledge.

40,41

Nurses must be in

constant cooperation with other members

of the healthcare team and the families of

patients.

42,43

By adopting a professional role and attitude,

nurses can ensure that the patients end their

lives in a hopeful environment where they are

peaceful, respected, and surrounded by loved

ones

with end-of-life care.

For this purpose,

regardless of the time and place of death, nurses

can create an environment that can bring the

loved ones of patients together.

Also, even

in the absence of the family of the patient, the

nurse must be a force that protects the patient

during the death process and does not prolong

or shorten the process but facilitates the situa-

tion for the patient/alleviates his/her suering,

and must not let him/her die alone.

In line with

all their roles, nurses must be able to ensure

that the patient is actively prepared for the

death process and has a well-respected death

experience.

48-53

Conclusion and Recommendations

The care requirements and priorities of indi-

viduals at the last moment of their lives dier,

as is the case in life. With end-of-life care, the

purpose is to support the vital functions of the

patient and spend as much as possible pain-free

time before death with relatives in a digniﬁed

manner. Although the nurses who accompany

and constantly care for patients in their last

moments of life often witness their death, each

patient and death is unique. Nurses have impor-

tant roles in supporting patients and families in

the transition from treatment-oriented care

to eective end-of-life care. All practices that

nurses will do in their roles in end-of-life care

are important in ensuring that the patient expe-

riences an honorable and good death. In the

training to be provided to nursing students and

nurses working in hospitals, it is recommended

to emphasize the importance of nurses in pro-

viding eective end-of-life care for patients and

the role of nurses in end-of-life care.

Peer-review: Externally peer-reviewed.

Author Contributions: Concept – N.U.A E.Y.;

Design – N.U.A., E.Y.; Supervision – E.Y.; Data

Collection and/or Processing – U.A.N., E.Y.; Analysis

and/or Interpretation – E.Y., U.A.N.; Literature

Review – E.Y., U.A.N.; Writing Manuscript – E.Y.,

U.A.N.; Critical Review – E.Y., U.A.N.

Declaration of Interests: The authors have no con-

ﬂicts of interest to declare.

Funding: The authors declared that this study has

received no ﬁnancial support.

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