Learning Objectives
By the end of this section, you will be able to:
- Analyze how caring for the dying patient affects the health-care provider
- Evaluate the health-care provider’s attitudes toward death and dying
- Discuss options to support the caregiver during the end-of-life process
To develop a level of comfort with patients who are seriously ill, the nurse and other clinicians should consider their own experiences and values related to illness and death. Taking time to reflect, read, and talk with others is helpful when examining one’s own beliefs about death and dying. Talking with individuals with different cultural beliefs will give nurses greater insight and ability to see things “through a different lens,” making them more sensitive to other cultures’ death-related beliefs. Finally, talking with other nurses and colleagues can help the nurse to gain a broader perspective on the diverse values shared by other health-care workers and the patients in their care.
Special Considerations for the Health-Care Team
Nurses and their health-care teams encounter death and loss daily, making grief a common experience. This can result in unresolved sadness, which Smith-Stoner and Frost have referred to as shadow grief. Everyone may possess a bit of shadow grief, but health-care providers tend to have a great deal. If left unresolved, the negative impacts of working with the dying—and the associated grief, unresolved anxiety, or denial—can lead to illness and burnout.
It is important to face our emotions, to stop pretending that we do not experience grief and the associated suffering of caring for the dying. Common defenses to avoid confronting our grief include suffering in silence, remaining “strong,” staying busy, and taking care of others. Talking with other members of the care team is important for processing the intense emotions associated with caregiving of the dying (Smith-Stoner & Frost, 1998).
The Nurse’s Attitudes Toward Death and Dying
The nurse’s attitude toward death and dying can be a barrier to providing holistic care during end-of-life care. Holistic care includes the care of the whole person—their body, mind, spirit, and emotions. While death and dying tend to be difficult conversations for both health-care providers and patients, such conversations may be welcomed by the patient. In fact, as nurses enter the patient’s world to discuss death and dying, the nurse can find healing through the patient’s struggles and strengths. Conversations of this nature also help the patient find acceptance, enabling them to let go of related anger or depression. Communication can be healing for everyone involved, especially when the topic is a difficult one.
Life-Stage Context
Children and Hospice
Death and dying do not discriminate by age. As difficult as it may be to accept, children die, too. To come to terms with this reality, you may need to accept the child’s medical condition in your mind before you can accept it in your heart.
Dying children need our honesty. Protecting a child from the truth will likely result in them feeling alone and isolated. Children can cope only with what they know, making it crucial to create open, honest communication. Follow the child’s prompting to determine what they do or do not want to know. Do not be surprised if they wax and wane between these two things. If you do not know the answer to a question, admit this to the child. Simply reassure them that together you will find out.
It is important to use language the child will understand as they slowly come to terms with the fact that they are dying. A young child may never fully comprehend the circumstances, but being honest with them will enable the child to think through the situation to formulate questions and develop more understanding. Never try to protect children by lying. It will lead to confusion, frustration, and anger because they will notice the emotions of their loved ones do not fit with the story they have been told.
While we should encourage communication, we should not force it. Children will process the reality of their situation in small doses over time as they are able to cope with it. Only answer what the child asks. Be careful not to overrespond.
Be mindful that children tend to make statements rather than directly articulate their thoughts or feelings. Be observant of cues or behaviors that may reflect unspoken needs and give insights into the child’s awareness of things. Allow children to experience their feelings. Do not try to help them get over their feelings; instead, help with validating them.
Understand that despite the situation, children still want to live as happily as possible, laughing and playing as much as they can. Do not deviate from normal routines, as they help children to remain comfortable, in control, and protected. However, it is also appropriate to create special moments as you help the child make each day count to its fullest.
Handling difficult situations such as a child dying will always have better results and outcomes when honesty, love, and respect are utilized during all communications among the child, family, caregivers, and friends.
Caring for the Caregiver
Providing comfort care at the end of life can be physically and emotionally draining. The nurse may notice that the primary caregiver is exhausted. Encourage the caregiver to ask for help and assist them in obtaining it. Often other people want to help but simply do not know what to do. Help could be as simple as allowing a visiting relative or friend to pick up a portion of the load so the primary caregiver can rest for a bit.
Small gestures can go a long way when helping a caregiver. For example, offering to sit with their loved one for an hour or two, volunteering to walk the dog, asking if they need something from the store, offering to watch any children, delivering a meal, or coordinating efforts among a small group of helpers are all ways to support a person who is in a caregiving role. Share this with the caregiver, encourage them to accept help, and remind them that it is equally important to care for themselves so they can provide ongoing, compassionate care for their loved one.
Effective support to help caregivers cope includes:
- Simply being available to listen.
- Answering questions and providing information related to the patient’s care, disease, and dying process.
- Formulating plans for after the patient dies.
- Helping the caregiver understand that it is all right to ask for help and to accept help when it is offered, and suggesting how to request or recommend help from others.
Ultimately, nurses, health-care professionals, families, and caregivers must make self-care a priority to provide quality, ongoing, compassionate care for dying patients.
Professional Caregiver
A professional caregiver, such as a certified nursing assistant or home health aide, is an excellent resource for primary caregivers. Having the help of a professional caregiver will free up time for the primary caregiver, often a family member, to attend to personal business or needs, spend time with their family, or simply rest. Working together with tasks such as bathing, dressing, and grooming can help decrease physical demands. There is no shame in admitting that we are human and need time to rest, replenish, and nurture ourselves. The caregiver may find that their loved one welcomes spending time with other people, making this a win-win for everyone.
Supporting Health-Care Colleagues and Ourselves
To cope with one’s own grief, effectively process the death and dying of patients, and deal with the anxiety of working with grieving patients and families, health-care professionals need support, education, and assistance. This should include a focus on ways to seek support and provide support for coworkers. Suggested ways to cope include:
- Taking time to cry with and for patients.
- Doing something physical such as walking, running, riding a bike, or hiking.
- Being outside in nature.
- Asking for help from the team. Do not try to shoulder everything on your own.
- Participating in employee-provided self-care resources, counseling, or classes.
- Visiting a place of worship and praying.
- Turning small pleasures into sources of joy in your personal and professional life.
- Remembering that laughter is also good medicine and healing.
- Creating a support group or small circle of friends to meet with.
- Journaling or listening to music.
Link to Learning
Providing resources to help caregivers is a simple way to provide patient and family education. Caregiving is a stressful job, but introducing topics such as how to share caregiving responsibilities, what strengths and weaknesses caregivers should consider, how to support a long-distance caregiver, and how to help a parent who is a primary caregiver can help relieve caregiver stress.