Learning Objectives
By the end of this section, you will be able to:
- Identify the role of hope in end-of-life care
- Examine grief, mourning, and bereavement as part of the end-of-life process
- Discuss ways to provide culturally competent care during the end-of-life process
- Examine resources available to support culturally and spiritually competent care
Patients suffer needlessly when they do not receive adequate care for symptoms associated with their serious illness. Not only is care needed for their physical problems, but it is also important to give attention to a patient’s psychosocial and spiritual needs. This will enable the nurse to have a more comprehensive understanding of how the patient and their family have been impacted by their illness, while also ensuring that the nurse develops a holistic plan of care to meet everyone’s psychosocial and spiritual needs.
Providing Psychosocial Care at the End of Life
Psychosocial care involves providing psychological and social support. This requires the nurse to use sensitivity and compassion to understand the patient’s feelings, thoughts, behavior, health, well-being, and quality of life. Often this can involve discussing difficult topics. Nurses have a responsibility to discuss the possibilities and probabilities related to a patient’s diagnosis and its impact on quality of life. The nurse also provides support as the patient reviews their life, values, and treatment decisions and seeks end-of-life closure. Simultaneously, nurses need to be culturally aware and exercise cultural competence when discussing death with patients and their families. The nurse must set aside their own prejudices or personal preferences to explore the type and amount of disclosure that will be most beneficial for the patient and family within their unique belief systems.
Cultural Context
Culture, Religion, and End of Life
Cultural and religious beliefs significantly shape an individual’s perspectives on death and their end-of-life practices. Recognizing these diverse beliefs is essential for providing respectful and empathetic care. Each religion or cultural group has its own unique practices and principles surrounding death, which can impact medical decisions, funeral arrangements, and grieving processes. Table 32.6 summarizes how major religions around the world view death.
| Religion | Major Beliefs about Death |
|---|---|
| Catholicism |
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| Protestantism |
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| Judaism |
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| Buddhism |
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| American Indian |
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| Hinduism |
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| Islam |
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| Note: Beliefs may vary within each religion, and the information here represents general beliefs of each religion. | |
Understanding and respecting these diverse beliefs and practices is fundamental for nurses to provide compassionate, culturally competent care. Tailoring care to accommodate these needs ensures that patients and their families experience dignity and respect during the end-of-life process.
Hope
Hope is as much an integral part of end-of-life care as it is a part of curative care. In the medical community, hope is usually associated with finding a cure. However, in end-of-life care, hope is equated with prolonging life and maintaining one’s quality of life and dignity. Patients receiving end-of-life care still have hope for things they want to accomplish.
According to psychologist C. R. Snyder (1994), there are three conditions for hope to thrive: goals, pathways, and agency. A goal is a desire, and a pathway is the means to obtain the goal. Agency refers to the beliefs that motivate us to strive for our goals. Agency can also be uplifted by the love, care, and support provided by those around us. While serious illnesses can easily make us feel hopeless, it is important for nurses to be a support network for patients and families, helping them navigate the pathways and nurture the agency necessary to achieve their goals during end-of-life care.
Clinical Safety and Procedures (QSEN)
Patient-Centered Care: Fostering Hope
It is important for a nurse to foster hope. Here are some methods a nurse can use:
- Make time to listen.
- Encourage patients to share their feelings.
- Provide accurate feedback and information.
- Support patient control over their circumstances, choices, and environment.
- Assist the patient in finding meaning in their life.
- Encourage realistic goals.
- Facilitate communication within the family.
- Assist with creating and developing networks within the family or community.
- Follow up with the social worker and chaplain to coordinate visits for the patient.
Grief, Mourning, and Bereavement
The emotions that a person feels internally after the loss of a loved one is called grief, while the outward expression of grief, such as wearing black, conducting a funeral or memorial, or journaling, is called mourning. The time frame following the loss, in which grief is experienced and mourning is expressed, is called bereavement. In 1969, Elisabeth Kübler-Ross categorized five stages of grief, as seen in Table 32.7. It is important to note that everyone grieves differently and at their own pace. Thus, the five stages of grief are cycles that may be repeated for an indefinite amount of time. A patient will also experience these various stages as coping mechanisms at the end of their life.
| Stage | Description |
|---|---|
| Denial | The person may have difficulty accepting the circumstances are true. They may experience feelings of isolation or seek another health-care professional’s opinion. |
| Anger | The person may wonder, “Why me?” They may feel resentment, rage, or envy directed at family members, health-care professionals, caregivers, or God. |
| Bargaining | The person may bargain for the patient to see a specific event, like a grandchild’s birth or graduation, or plead for more time to reach a specific goal. This process might include making promises to God. |
| Depression | The person may feel a deep sadness about the loss. The patient may fear that a loved will struggle to get along after their passing. |
| Acceptance | The person is no longer angry or depressed and can acknowledge that the patient has lived a good life. |
Link to Learning
Watch this humorous video to see the Kübler-Ross stages of grief in action.
Patient and Family Concerns
Families may feel powerless or experience increased guilt related to their feeling of powerlessness. A helpful intervention is to involve the family in the patient’s treatment and care. Families may also have learning deficits or inadequate coping mechanisms or communication skills; they may feel off balance with the impending death of their loved one. Nurses are exemplary teachers who quickly find themselves in a case manager role, coordinating and implementing the patient’s plan of care and becoming the patient’s and family’s most utilized resource during end-of-life care.
It is also important to note that the family’s method of coping may not coincide with the values and beliefs of the nurse or other members of the interdisciplinary team. Regardless, it is imperative that the patient’s and family’s wishes be respected to the greatest extent possible. The nurse’s role throughout is to help the family members obtain the knowledge and tools they need to care for their loved one and process their death. This help could be as simple as teaching the family techniques for conserving their energy. Knowledge deficits can also relate to:
- a lack of understanding related to the patient’s diagnoses, treatment regimen, or plan of care.
- an inability to anticipate a medical crisis.
- inexperience with end-of-life care and the protocol to follow for emergent care outside of the hospital.
However they are needed, nurses provide a strong foundation of support as they help and guide the patient and family through the end-of-life period.
Providing Culturally Competent Care
A portion of the nurse’s role during assessment is to gather information related to the values, preferences, and practices of each patient. Sharing the patient’s and family’s cultural beliefs and practices with the care team is essential. This information, including the details of the patient’s end-of-life care, preparation for death, and after-death rituals, should be included in the plan of care.
An important component of providing culturally competent care within the family is to use discretion as to the appropriate time and setting for sensitive conversations to be conducted. For example, in some cultures a designated family member speaks for the patient regarding treatment decisions. Several conversations during several patient visits may be necessary to ascertain the full context of the patient’s end-of-life beliefs, preferences, and practices; this can give the nurse time to formulate appropriate questions for the next visit.
Providing context for these discussions is also helpful. For example, the nurse might preface a conversation by saying: “We want to ensure that we provide care that best addresses your needs. Honoring and supporting your wishes is of the utmost importance to us. We welcome any feedback that you may have as to how we are doing and what we could do better. If you do not mind, I would like to ask you a few questions to help me better understand and support what is most important to you. You don’t have to answer anything that might make you feel uncomfortable, or if you need to time to think about your answer to share during our next visit, that is fine too.”
As a new nurse, discussing sensitive information of this nature might feel uncomfortable at first, but it will become easier with time. Partnering with an experienced nurse for the first few assessments can be helpful. The bottom line is that patients and families will appreciate and respect the nurse for being forthright in initiating conversations that prioritize them, especially their cultural beliefs and practices.
Spiritual Care
When nearing the end of life, spiritual needs can become as important to a patient as physical concerns. While spiritual assessment is a key component for a terminally ill patient, spirituality is much broader than a patient’s religious preference, affiliation, or beliefs. Spiritual needs may include the presence or absence of a sense of peace, purpose in life, or harmony with loved ones; it may require making amends with someone to resolve unsettled issues or offering reassurance that certain items will be taken care of (Swihart, Yarrarapu, & Martin, 2023).
Patients will often express their questions or concerns to a nurse before openly discussing them with their provider or family. However, the social worker and chaplain on the care team are also instrumental in helping with the patient’s and family’s spiritual care. It is important to sharpen your listening skills to bridge the communication gap within the family, helping to begin difficult conversations. Active listening and a heart of compassion go a long way in end-of-life care.
Some patients find solace in their faith and will ask to read a religious text or listen to religious music; other patients may derive equally spiritual benefits from reading secular texts or listening to secular music. Spiritual comfort can also be found when family and friends talk with their loved one about the importance of their relationship or when they reminisce about fond memories and good times. However it happens, optimal spiritual care provides holistic healing for a patient and their family.
Link to Learning
The Library for Spirituality and Healthcare provides an opportunity to expand your learning on a variety of topics related to spirituality and its influence on the delivery of health care and patient outcomes.
Resources to Support Cultural and Spiritually Competent Care
Many communities are culturally diverse. To ensure cultural and religious competence in clinical practice, it is important to have an understanding of various religions and their beliefs associated with clinical issues, death, and dying. Palliative and end-of-life care should always consider why culture is important, how culture influences end-of-life care, what barriers to effective communication exist, and what role the family should play. To provide the best care to patients, the nurse should utilize cultural resources and examine their own personal cultural beliefs to better understand the effects of culture on nursing care.
Link to Learning
The 2023 article “Cultural Religious Competence in Clinical Practice” by Diana L. Swihart, Siva Naga S. Yarrarapu, and Romaine L. Martin provides an overview of key tenets of major religions the nurse may encounter in patient care.