16.4 Nursing Care at the End of Life

Nursing care at the end of life remains patient-centered but process is altered. Whereas nurses generally focus on interventions to monitor and improve health conditions, a emphasis shifts to the comfort of patients and families. Routine medications, IVs, and treatments may be discontinued. Medications for the relief of pain and other uncomfortable symptoms may be initiated, often at doses beyond the normal safe range. The patient may no longer want to eat, drink, or be moved. Nurses need to focus less on the “doing” element of care and more on “being with” the patient and family. This section will focus on the end-of-life process and the important role of therapeutic communication.

Caring for Patient and Family

When caring for a patient who is nearing the end of life, the family members require nursing care as well. Fading away is a transition that families make when they realize their seriously ill family member is dying. Although they may have been previously told by a health care provider that their loved one would die from the illness, there is often a sudden realization their family member “is not going to get any better” when their health begins to significantly decline. With this realization comes the transition of fading away.^[1] There are various dimensions that both patients and family members experience during this fading away process:

• Redefining: There is a shift for both patients and families from “what used to be” to “what is now.”
• Burdening: As patients become more dependent, they may feel as if they are a burden to their family–physically, financially, emotionally, socially, and spiritually. Yet, family members typically do not feel the care they are providing is a burden, but rather, “something you do for someone you love.”
• Searching for Meaning: Patients journey inward, seek spiritual reflection, and become more connected to important family members and friends. Family members may search for meaning inwardly through spiritual reflection or explore for meaning with family members and friends.
• Living Day to Day: Patients who eventually find meaning in their illness live each day with a more positive attitude. Family members who try to “make the best of it” make efforts to enjoy the limited time left with their loved one.
• Preparing for Death: Patients often want to leave a legacy. Spouses often want to meet every need of their ill spouse. Patients and family members may begin to make prearrangements for the funeral, as well as get their will and other financial matters in order.
• Contending with Change: Patients and their family members change roles, social patterns, and work patterns. They know the life they used to have will soon be gone.^[2]

Nurses can assist patients and family members during the fading away transition by being present and actively listening. Patients may want to see friends and family members to say goodbye or they may request privacy. If the patient is in the hospital but will be transitioning to hospice, the nurse provides information about hospice services. An excellent resource for family members of patients during the fading away transition is a pamphlet called “Gone From My Sight – The Dying Experience” by Barbara Karnes <this is a book on Amazon – replace with more general information?>. This pamphlet is typically provided to families when a patient signs up for hospice services. It explains how people with chronic illness die in stages of months, weeks, days, and hours. It helps to answer the common question, “How long?” from patients and their family members.

Caregiver Support

Most patients with chronic illness have family caregivers that are an extension of the health care team and work around the clock, all days of the week. They typically provide 70-80% of the care at home. It is important for nurses to assess the caregiver when seeing them with the patient in the home, clinic, hospital, or long-term setting and provide encouragement. It is helpful to acknowledge their work is very difficult and to praise them for their efforts.^[3]

Research shows caregivers often have the following needs^[4]:

• Support, assistance, and practical help (e.g., finding others to assist with grocery shopping, going to the pharmacy, and food preparation)
• Honest conversations with the health care team
• Assurance their loved one is being honored
• Inclusion in decision-making
• Desire to be listened to and their concerns heard
• Remembrance as a good and compassionate caregiver
• Assurance that they did all they possibly could for their loved one

The nurse should assess the caregiver’s needs for further assistance, as well as their social support network. While family are not technically patients, nurses can ask about their physical well-being, sleep patterns, and ability to perform other responsibilities. They may show signs of declining health, clinical depression, or signs of increased use of alcohol and drugs. Family members need to be encouraged to take breaks and spend time away from the bedside. Assist them in identifying and using support systems and refer them to resources and support groups in the community as needed.^[5] Sometimes family members do not agree on a course of action for the patient and may even argue in the presence of the patient. The nurse must not engage in expressing opinions but should involve the healthcare team in explaining the patient’s condition, options, and resources for the family members.

Cultural Considerations Regarding Death

When assessing patients, family members, and caregivers, it is important to respect their values, beliefs, and traditions related to health, illness, family caregiver roles, and decision-making. Information gathered through is used to develop a nursing care plan that incorporates culturally sensitive resources and strategies to meet the needs of patients and their family members.^[6]

See Figure 16.4a^[7] for an image depicting a community grieving.

Nurses can acquire knowledge about how different cultural beliefs influence a patient and their family members’ decision-making, approach to illness, pain, spirituality, grief, dying, death, and bereavement. There are many ways to grieve. While Table 16.1 below lists broad cultural and spiritual elements of beliefs about dying and death, families, individuals, and communities may practice variations or blending of traditions.

Table 16.1 Comparison of Traditional Spiritual Beliefs about Death^[8]

Taking Action — Communication

Be Present and Patient-Centered

Most nurses engage in honest, casual conversations with patients and families, and it helps patients to get to know the nurse and vice versa. It also helps put patients more at ease with you. The special nurse-patient connection formed as a result is important in fostering trust, which encourages the patient and family to follow through on the various things you will teach them as part of good nursing care. Patients may be sick, but they are not unintelligent, and they can sense if the nurse is not being himself or herself. In end-of-life care, an effective nurse-patient relationship is very important and can be successfully fostered as a result of simply being oneself. Being oneself is not the same as ignoring professional boundaries. A nurse must maintain a professional demeanor and minimize personal details while focusing on the patient. Humor may have a role in some situations, but it should be initiated by the patient and used only when the nurse has a trusting relationship. Keep questions open-ended. Some examples include:

• What is this like for you?
• What information do you need?
• What concerns you the most right now?

Be Honest

If a patient who already has been told prognostic information makes a statement to the nurse such as “So I’m dying, aren’t I?” This is an opportunity to be honest with the patient and establish effective nurse-patient communication. Since they have already been told their prognosis, the nurse can follow up with, “I know that the doctor has told you a lot of difficult information recently. What is your understanding?” Listen to their response and respond to the information that is important to them. Nurses should never respond in a cliché matter-of-fact way when it comes to death and dying. Statements such as “Well, we are all dying slowly each day anyway” minimalize the concerns of the patient. Nurses want to show patients that they are fully engaged with them and are honest. If the nurse is asked a question that they do not know, a good response would be to honestly tell the patient that you do not know but will get the correct answer for them. Patients who have spent a lot of time in the health care system have encountered many individuals along the way, as well as a wide variety in the levels of care provided.

It is never acceptable to lie to a patient when asked a question related to their health that is within your scope of practice to disclose. Nurses are rarely the clinicians to “break the news” or give prognostic information to a patient for the first time. That is the role of the provider, and if a patient asks you about this, you need to defer them to the provider. You should not ignore their questions, because any question the patient has is valid to them. The nurse needs to follow-up and find the correct person to provide that information to the patient.

Show Respect

Make eye contact with patients as a way of showing that you care. If the nurse’s face is focused on the computer or medical record more than the patient, the patient assumes the nurse is not truly listening. Having a visual focus on the patient keeps the nurse informed about nonverbal cues indicating anxiety or depressed mood. If possible, try to be at eye level with the patient, rather than standing over them to equalize the conversation. Physical touch can help the patient feel less stigmatized, but the nurse should ask permission, since not all individuals are comfortable with touch due to personal or cultural reasons.

It is important to not leave the family members out of the conversation. A patient who feels that their family is being listened to and respected will be a more effective partner in communication. And a family who sees that their loved one is being listened to and respected will be more likely to communicate with the nurse.

Table 16.2 below contains some key phrases that take the place of certain other phrases that do not foster effective nurse-patient communication. The original response denotes negativity whereas the suggested response seems more open to the patient’s concerns.

Table 16.2 Suggested General Responses

These are just a few examples showing how adding a few different words can make a big difference in the way the nurse responds to the patient. Most of the suggested responses show an underlying focus on the patient. Instead of the response being about what the nurse cannot do for the patient, it’s about what the nurse can do. This helps improve any potential anxiety, fear, or anger that the patient may be having and instead makes the patient feel that their concerns or statements have been heard and are important.

A Good Death

Death is a physical, psychological, social, and spiritual event. Family members who witness the last weeks, days, hours, and minutes of their loved one’s life will remember the death for all their lives. Although death is often perceived negatively in the American culture, research has found several themes that define a “good death” when nurses and the interdisciplinary team are caring for dying patients and their families^[9]:

• Patient preferences are met, including preferences for the dying process (i.e., where and with whom) and preparation for death (i.e., advanced directives, funeral arrangements).
• The patient is pain-free with emotional well-being.
• The family is prepared for death and supportive of patient’s preferences.
• Dignity and respect are demonstrated for the patient.
• The patient has a sense of life completion (i.e., saying goodbye and feeling life was well-lived).
• Spirituality and religious comfort are provided.
• Quality of life was maintained (i.e., maintaining hope, pleasure, gratitude).
• There is a feeling of trust/support/comfort from the nurse and interdisciplinary team.^[10]

Bereavement

The bereavement period includes grief (the inner feelings) and mourning (the outward reactions) after a loved one has died. A bereavement period is the time it takes for the mourner to feel the pain of the loss, mourn, grieve, and adjust to the world without the presence of the deceased. Bereavement can take a physical toll on a survivor. It is associated with an increased risk of myocardial infarction and cardiomyopathy for survivors, and widows and widowers have an increased chance of dying after their spouses die.^[11]

A bereaved person should be encouraged to talk about the death and understand their feelings are normal. They should allow for sufficient time for expression of grief and should postpone significant decisions such as changing jobs or moving. It is also important to encourage them to focus on their spirituality to enhance coping during this difficult time.^[12]

Some family members deny the need to express grief or feel the pain that accompanies a loss. However, although painful, both are beneficial to healing. As part of the interdisciplinary health team, nurses are often at the front line of helping patients and family members cope with their feelings of loss and grief. The nursing role during the bereavement period includes the following^[13]:

• Assisting with enhanced coping mechanisms
• Assessing and facilitating spirituality
• Facilitating the grieving process by supporting the patient and survivors to feel the loss, express the loss, and move through the tasks of grief
• Communicating assessments and interventions with the interdisciplinary team

Children

Children who have experienced the loss of a parent, sibling, grandparent, or friend experience grief based on their developmental stage. It can be normal grief or complicated grief. Children may be limited in their ability to verbalize and describe their feelings and grief. See Figure 16.4b^[14] for an image depicting a grieving child.

Symptoms of grief in younger children include nervousness, uncontrollable rages, frequent illness, incontinence, rebellious behavior, hyperactivity, nightmares, depression, compulsive behavior, memories fading in and out, excessive anger, overdependence on the remaining parent, denial, and/or disguised anger. Children may not understand that death is permanent until they are in preschool or older. It is important to use the word “death” and not euphemisms like “gone to sleep” or “gone away,” which can be confusing or ambiguous to children. Additionally, using these euphemisms may cause children to fear sleep.^[15]

Symptoms of grief in older children include difficulty concentrating, forgetfulness, decreased academic performance, insomnia or sleeping too much, compulsiveness, social withdrawal, antisocial behavior, resentment of authority, overdependence, regression, resistance to discipline, suicidal thoughts or actions, nightmares, symbolic dreams, frequent sickness, accident proneness, overeating or undereating, truancy, experimentation with alcohol or drugs, depression, secretiveness, sexual promiscuity, or running away from home.^[16]

Play is the universal language of children, so nurses should use it therapeutically when possible. Encouraging children that their grief is “normal” gives them comfort. Refer children, parents, and families to grief specialists as indicated. Make sure families are aware of local support groups.^[17]

Parents and Grandparents

For parents, the death of a child can be devastating with a great need for bereavement support. For grandparents, the grief can be twofold as they experience their own grief, in addition to witnessing the grief of their child (the parent). Studies have shown that grandparents’ grief is seldom acknowledged.^[18]

Spouses

The death of a husband or wife is well recognized as an emotionally devastating event, being ranked on life event scales as the most stressful of all possible losses. The intensity and persistence of the pain associated with this type of bereavement is thought to be due to the emotional marital bonds linking husbands and wives to each other. Spouses are co-managers of home and family, companions, sexual partners, and fellow members of larger social units.

Nursing Actions

When communicating with the bereaved, it is more important to listen and be present rather than say the “right words.” It is also helpful to simply encourage silence. However, certain phrases should be avoided because they can create barriers in therapeutic communication:

• Avoid statements like, “I know/can imagine/understand how you feel.” Even if you have been through a similar situation, you don’t know how the survivor feels. Instead say, “This must be very difficult for you. Would you like to talk about it?”
• Don’t minimize the individual’s grief reaction with a statement like, “You should be over this by now.” Instead, say, “This process takes time, so don’t feel as if you need to rush through it.”
• Avoid statements that minimize the significance of the loss, such as, “At least you had a good life with them,” or “They’re in a better place now.” Instead, focus on exploring their feelings related to the loss, such as, “Tell me what your relationship was like.”^[19]

Completion of the Grieving Process

Grief work is never completely finished because there will always be times when a memory, object, song, or anniversary of the death will cause feelings of loss for the survivor. However, healing occurs and is characterized by the following:

• The pain of the loss is lessened.
• The survivor has adapted to life without the deceased.
• The survivor has physically, psychologically, and socially “let go.”^[20]

Letting go is a difficult process. One can let go and still find love and true meaning in the relationship they had with their loved one. Letting go does not mean cutting oneself off from the memories but adapting to the loss and the continued bonds with the deceased.^[21]

Self-Care

It is important for nurses to recognize that providing end-of-life care can have a significant impact on them. A nurse’s grief might be exacerbated when patient loss is unexpected or is the result of a traumatic experience. For example, an emergency room nurse who provides care for a child who died as a result of a motor vehicle accident may find it difficult to cope with the loss and resume their normal work duties.

Grief can also be compounded when loss occurs repeatedly in one’s work setting or after providing care for a patient for a long period of time. In some health care settings during the COVID-19 pandemic, nurses did not have time to resolve grief from a loss before another loss occurs. Compassion fatigue and burnout occur frequently with nurses and other health care professionals who experience cumulative losses that are not addressed therapeutically.

Compassion fatigue is a state of chronic and continuous self-sacrifice and/or prolonged exposure to difficult situations that affect a health care professional’s physical, emotional, and spiritual well-being. This can lead to a person being unable to care for or empathize with someone’s suffering. Burnout can be manifested physically and psychologically with a loss of motivation. It can be triggered by workplace demands, lack of resources to do work professionally and safely, interpersonal relationship stressors, or work policies that can lead to diminished caring and cynicism.^[22] Here are some questions to consider if fatigue is chronic:

• Has my behavior changed?
• Do I communicate differently with others?
• What destructive habits tempt me?
• Do I project my inner pain onto others?^[23]

Self-care is important to prevent compassion fatigue and burnout. It is important for nurses to recognize the need to take time off, seek out individual healthy coping mechanisms, or voice concerns within their workplace. Prayer, meditation, exercise, art, spending time outdoors, and music are examples of healthy coping mechanisms that nurses can use to progress through their individual grief experience. Additionally, many organizations sponsor employee assistance programs that provide counseling services. These programs can be of great value and benefit in allowing individuals to voice their individual challenges with patient loss. In times of traumatic patient loss, many organizations hold debriefing sessions to allow individuals who participated in the care to come together to verbalize their feelings. These sessions are often held with the support of chaplains to facilitate individual coping and verbalization of feelings.

By becoming self-aware, you can implement self-care strategies to prevent compassion fatigue and burnout. Use the following “A’s” to assist in building resilience, connection, and compassion:

• Attention: Become aware of your physical, psychological, social, and spiritual health. What are you grateful for? What are your areas of improvement? This protects you from drifting through life on autopilot.
• Acknowledgement: Honestly look at all you have witnessed as a health care professional. What insight have you experienced? Acknowledging the pain of loss you have witnessed protects you from invalidating the experiences.
• Affection: Choose to look at yourself with kindness and warmth. Affection prevents you from becoming bitter and “being too hard” on yourself.
• Acceptance: Choose to be at peace and welcome all aspects of yourself. By accepting both your talents and imperfections, you can protect yourself from impatience, victim mentality, and blame.^[24]

If compassion fatigue continues, the nurse should seek professional care.