End-of-Life Care (Client Care) (Nursing) Part 1

Learning Objectives

1.    Explain how end-of-life nursing care is related to the basic needs of all people.

2.    Explain two types of advance directives.

3.    Define and discuss DNR, DNH, and DNI orders and how they relate to end-of-life care.

4.    Discuss the emotional needs of the dying person and his or her family.

5.    Briefly discuss pain management in the terminally ill client.

6.    Identify nursing activities that may assist the family to cope with the death of their loved one.

7.    Describe postmortem care of the body.

8.    Discuss how members of the healthcare team can help each other when a client dies.

IMPORTANT TERMINOLOGY

antiemetic Cheyne-Stokes respiration

palliative care

autopsy hospice

postmortem examination

brain death Kussmaul’s breathing

respite care

Acronyms

AD

DNR

DNH


PSDA

DNI

TPN

Working with clients at the end of their lives and with their families is a privilege and a challenge. Assisting clients with end-of-life care allows nurses to use many of the technical and mental health skills learned throughout the entire nursing program. Assisting clients with end-of-life care is a valuable learning experience, not only for the nurse, but also for the client and the family. You have an opportunity to provide physical and emotional support and care to the client and to involve the family deeply in that care. Nurses may encounter a person at the end of life in various settings, such as a hospital, long-term care facility, hospice care, or in the client’s own home.

Western medicine has traditionally emphasized the preservation of life at all costs. This may be a challenge for the nurse when assisting a client through the death experience. It is important to remember that nursing care can provide needed physical care and comfort, as well as respect, empathy, and understanding; this must be given without prejudice or bias. Nurses who dedicate their careers to end-of-life care must be compassionate and caring and must understand their own feelings regarding life and death. By drawing on spiritual and emotional reserves and by facing the crisis of death, the nurse can grow emotionally and spiritually.

When caring for clients who are dying and their families, listen to them and offer unconditional support. It is often helpful to offer resources for spiritual counseling for the client and the family (Fig. 59-1). A positive end-of-life experience is impeded when the client, the family, and the nurse do not have the same expectations and goals.

STAGES OF DYING

A number of years ago, Elisabeth Kübler-Ross, in her landmark work, identified stages of dying. She stated that most people pass through these stages at the end of their lives. Although there are other theories, Kübler-Ross’ stages of dying are still generally accepted today. These stages are:

•    Denial and isolation (“This isn’t happening to me!”)

•    Anger and rage (“Why is this happening to me?”)

•    Bargaining and developing awareness (“I promise I will be a better person if only . . .”)

•    Depression (“I don’t care any more.”)

•    Acceptance and peace (“I’m ready for whatever happens.”)

•    Detachment (withdrawal from life)

These stages, as well as other aspects of the dying experience, are discussed in more detail.This topic focuses primarily on the physical nursing care required during end-of-life care.

Offer to secure spiritual counseling or grief counseling for the client and/or the family.

FIGURE 59-1 · Offer to secure spiritual counseling or grief counseling for the client and/or the family.

Key Concept The client’s family often goesthrough the same stages of grief and loss related to the dying experience as does the client. In addition, not all people go through the grief experience in the same sequence or in the same way

THE CLIENT’S WISHES

It is important that the client’s wishes about his or her care be known to the healthcare staff and be carried out as requested by the client. This information must be carefully documented in the client’s record.

NCLEX Alert You should be alert during the examination to the meanings of acronyms found in this topic: DNH, DNI, DNR, AD and your nursing role in explaining these to clients and their families and ensuring that the client’s wishes are carried out during the client’s end-of-life experience.

Advance Directives

An advance directive (AD) is an expression of the client’s wishes about the kinds of treatment and care that he or she wants to receive if terminally ill or unable to make decisions about healthcare. In 1990, Congress passed the Patient SelfDetermination Act (PSDA), a step toward increasing the autonomy of dying persons. Healthcare facilities that receive federal funds must ask every client on admission if he or she has an AD. The client’s response must be entered into the client’s health record. The client also must be given assistance if he or she wishes to make a living will or other healthcare directive.

An AD can take several forms. The most common ADs are:

•    Living will

•    Durable power of attorney for healthcare

A living will is a document in which clients state the types of treatment they desire to receive or not to receive if a terminal situation arises or if they are unable to make decisions or express their wishes. A durable power of attorney for healthcare designates a person of the client’s choice to make these healthcare decisions should the client become incompetent (unable to make or express decisions about care). Signed copies of advance directives may be carried by a client and presented to the healthcare facility on admission. An electronic form is also available in a device called the E-HealthKEY.

Codes

The AD informs healthcare personnel about procedures the client requests to be performed or not to be performed if he or she becomes terminally ill. Several healthcare “codes” are involved in these instructions.

An individual may have a do not resuscitate (DNR), do not intubate (DNI), or both orders in his or her health record. Healthcare personnel are thus informed that if this person experiences cardiopulmonary arrest, a “code blue” (or the code name for arrest in that facility) should not be called. The person will be allowed to die naturally, without mechanical or chemical intervention. The use of tube feedings may also be specified as a treatment the client wants or does not want. Clients who are DNR or DNI or who refuse tube feedings will be kept as comfortable as possible and given emotional support. It is important to carry out a client’s wishes as a component of responsible healthcare delivery.

Nursing Alert A written physician’s order is needed for a client in a healthcare facility to be DNR/DNI. A copy of the signed advance directive must also be in the client’s record.

In the nursing home or in the client’s home, the nurse may see a do not hospitalize (DNH) order, in addition to a DNR or DNI order. Clients need to inform their families and significant others of their wishes regarding hospitalization and resuscitation. The client and family should know the policies of ambulance and emergency transport agencies in their area. Many such service personnel are trained to give cardiopulmonary resuscitation (CPR) to anyone under their care. When a client does not wish to be hospitalized or resuscitated, the family needs maximum support in the home if the person’s condition becomes critical.

Nursing Alert A copy of each person’s living will should be readily available so it can be taken to the acute care facility in an emergency.

Some individuals with terminal illnesses are on full code, meaning that the CPR team is to be called in the event of cardiopulmonary arrest, even though natural death is imminent. When working in environments in which death occurs frequently, it is particularly important to know in advance which individuals are DNR and which are full code.

Key Concept Healthcare personnel do not determine whether or not a code should be called. Clients, physicians, or family members have already decided in advance, and written instructions are on file. If a client does not have a specific DNR order a code is always called if the person should experience respiratory or cardiac arrest or another medical emergency such as critical hypoglycemia.

The Ethics Committee

Healthcare facilities are required to have an ethics committee. This committee assists in making difficult client care decisions. This committee may discuss various situations. Examples include whether or not to discontinue a feeding tube or ventilator for a client when there is no living will or when family members do not agree on what care should be given. The ethics committee may become involved in situations involving donation of organs or tissues for transplantation. The committee may also discuss types of medications to be used for symptom control. These are just examples; there are many difficult decisions to be made by this committee, and each case is different.

Key Concept Ethical dilemmas may occur when there is no advance directive or when there is an unclear advance directive.

Organ and Tissue Donation

Advance directives or the client’s driving license may indicate the wish to donate tissues (e.g., cornea, bone, skin) or organs (e.g., kidney, heart, lung). However, after death, most states require the next-of-kin or legal guardian to give permission as well. Generally, a remaining spouse has the legal authority to consent to donation and must be included in all decision-making. If there is no living spouse, the next closest relative, or the person with power of attorney, has the legal authority for consent.

A nurse specially trained in dealing with organ and tissue donation is more adept at handling the situation and should be involved, if at all possible. The role of this nurse is to educate the family about all aspects of donation and to answer any questions the family members may have. Commonly asked questions regarding organ and tissue donation are:

•    Can we still have an open casket? (Yes)

•    Is there any cost to us? (No)

•    Will we know who receives the organs or tissues? (Usually not)

•    Can we donate some organs/tissues but not all? (Yes)

Key Concept The nurse who approaches the family for organ and tissue donation should see the family through this time of decision making and not transfer the responsibility to another nurse or healthcare provider unless absolutely necessary

It is important for nurses to be sensitive to the need of the family to have privacy to discuss the matter of donation.

Provide a private place for them. Be sure all of the family’s questions are answered, and make sure they do not feel forced to donate organs and tissues. Rationale: The nurse must understand that some people will feel very vulnerable; they should not feel pressured into consenting to donation.

In some cases, special procedures (e.g., maintaining the client on a ventilator or heart/lung circulation until organs can be harvested) may be necessary to preserve the organs in sufficiently good condition to be transplanted successfully. This situation does not usually arise for tissues.

Key Concept Although a person may designate himself or herself as an organ or tissue donor; the family gains custody of the body at death. Most states have a law (often called the Uniform Anatomical Gift Act) that requires healthcare facilities to approach each family regarding donation of their loved one’s organs or tissues if a person dies or is expected to die very soon. Special courses are available to assist nurses in approaching family members at this difficult time. In many cases, being able to help another person by organ or tissue donation assists the family in dealing with the death of their loved one. Be sure your family knows about your wishes in relationship to organ and tissue donation!

The Client Who Chooses to Die at Home

If the client’s death has been anticipated and the client has chosen to die at home, a home care or hospice nurse will usually be assigned to the case. This nurse discusses plans for the client’s care with the family beforehand. Usually, the nurse is not present at the actual time of death, so the family must be prepared ahead of time. The family is instructed to call the home care nurse if the client’s condition significantly worsens or if the client dies. Most agencies have a nurse on call 24 hours a day to answer questions and to come to the home if necessary.

The Concept of Hospice

The term hospice designates a place or a plan of care designed to assist the end-of-life client and family. Hospice care uses the principles of palliative care to aid these people to work through the situation as comfortably as possible. Palliative care emphasizes comfort and pain control, so it encompasses nursing care and medical treatments that relieve or reduce symptoms of a disease or illness. Palliative care can be given at any point in a disease process and may be provided in a healthcare setting or in the client’s home. The hospice principle also provides respite care (time away) for the family. (To be admitted to a hospice program, the client must be certified as eligible by a medical practitioner, and usually the client’s life expectancy cannot exceed about 6 months.

Key Concept Palliative care is not aimed at curing disease or illness; its aim is to relieve symptoms.

BOX 59-1.

Acceptable Death Versus Good Death

One description of death, as related to different cultures* involves “acceptable death” and “good death.” An acceptable death is defined as “nondramatic, disciplined, and with very little emotion.” The definition goes on to say that most deaths in Western society fall into this category, particularly those occurring in a structured setting, such as a hospital.

A good death is defined as one that allows for “social adjustments and personal preparation by the dying person and the family.” In this description, the dying person attempts to complete unfinished tasks, says farewells, and the family begins to prepare for life without the person. A goal of nursing care is to move toward the concept of the good death for all clients and their families.

Cultural Considerations

Death and dying are viewed differently in various cultures. Some cultures look at death as a natural progression toward a better future; others look at death as a finality (Box 59-1).It is important for the nurse to respect the beliefs of each client and family. Allow them to grieve and minister to their loved one in their own way. Offer to call their spiritual advisor or the facility chaplain if they would like this type of support.

Special Considerations: CULTURE & ETHNICITY

Organ/Tissue Donation and Transplantation

Ethnic and religious groups have differing beliefs and concerns about organ and tissue donation.

•    African American—many oppose donation

•    Hispanic—generally oppose donation

•    Islam/Muslim—generally not allowed

•    Jewish—may agree to donation, with consent of rabbi

•    Roman Catholic—allow donation

•    Most Protestant faiths—allow donation

•    Christian Scientist—usually do not allow donation

•    Jehovah’s Witness—personal decision, but donated material must be cleansed with nonblood product

•    Church of Jesus Christ of Latter-day Saints (Mormon)—discuss with the church elder

•    Seventh-Day Adventist—personal choice

•    Hindu/Buddhist—no stated view, personal opinions vary

NCLEX Alert As you study this topic you are referred back to concepts and skills studied previously: technical or client-care skills, such as positioning, bathing, supplemental oxygen, communications skills, providing emotional support to clients and families, and the relationship of Maslow’s hierarchy of needs to the death experience. These may be incorporated into the NCLEX test scenarios.

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