Nursing is a unique profession in that care is provided at the beginning of a life, at the end of a life, as well as at various points in between. Some of the greatest challenges the nurse faces relates to the provision of care for clients with a very poor prognosis or who are in the process of dying. Not only do nurses have to care for patients who are dying, but they also have to work with those who are affected by death, those who have lost someone close to them and those who are experiencing the grieving process. Therefore, it is important for nurses to have a sound understanding of issues relating to death and dying in order to be able to provide appropriate end-of-life care. It should be remembered that hospice care involves providing care at the end of life, while palliative care promotes comfort and eases suffering.
Clients experience loss in many aspects of their lives. Grief is the inner emotional response to loss and is exhibited through thoughts, feelings, and behaviors. Bereavement includes both grief and mourning (the outward display of loss) as the individual deals with the death of a significant individual in their life.
Palliative or end‑of‑life care is an important aspect of nursing care and attempts to meet the client’s physical, spiritual, emotional, and psychosocial needs. End‑of‑life issues include decision‑making in a highly stressful time during which the nurse must consider the desires of the client and the family. Decisions are shared with other health care personnel for a smooth transition during this time of stress, grief, and bereavement.
As with all aspects of care there is a legal dimension to care relating to end-of-life issues. These are specific to this stage of the care spectrum and the most important ones for the nurse to have knowledge of include the following:
Advance directives: Legal documents that direct end‑of‑life issues. These enable the client to spell out decisions about end-of-life care preferences ahead of time.
Living will: Directive documents for medical treatment as per the client’s wishes. This is a particular form of an advanced directive usually limited to life sustaining procedures. This enables the client to give legal instructions regarding preferences for specific medical care when they are unable to make decisions for themselves.
Health care proxy (also known as durable power of attorney for health care): A document that appoints someone to make medical decisions when the client is no longer able to do so on his own behalf.
Types of Loss
When dealing with clients the nurse has to understand that clients may have experienced some form of loss that may help to explain their behavior(s) or outlook. It is important to note that there are a variety of types of loss that can be described in the following way:
Necessary loss: A loss related to a change that is part of the cycle of life that is anticipated but still can be intensely felt. This type of loss can be replaced by something different or better.
Actual loss: Any loss of a valued person, item, or status, such as loss of a job that can be recognized by others.
Perceived loss: Any loss defined by the client that is not obvious or verifiable to others
Maturational or developmental loss: Any loss normally expected due to the developmental processing of life. These losses are associated with normal life transitions and help to develop coping skills (e.g., child leaving home for college).
Situational loss: Any unanticipated loss caused by an external event (e.g., family loses home during tornado).
Anticipatory loss: Experienced before the loss happens (e.g., anticipated loss of income and social connections following retirement).
Theories of Grief
The process of grief has been recognized historically and takes different forms in various cultures. In our culture one of the best known and most widely used models is the Kübler-Ross Model, and it is used in medical and care situations, but has also been widely applied more generally throughout society to help provide an explanation for the grieving process. It is a recognizable process and provides perspective on the process that the grieving person is going through.
The model outlines five stages of the grieving process:
- Denial: The client has difficulty believing a terminal diagnosis or loss.
- Anger: The client lashes out at other people or things.
- Bargaining: The client negotiates for more time or a cure.
- Depression: The client is overwhelmingly saddened by the inability to change the situation.
- Acceptance: The client acknowledges what is happening and plans for the future by moving forward.
Note: The stages might not be experienced in sequential order, and the length of each stage varies from person to person.
Factors Influencing Loss, Grief, and Coping Ability
All of us are individuals and although we may proceed through the stages of the Kübler-Ross model, we all experience grief and loss individually. There are a number of factors that have been identified that have influenced the loss, grief and coping ability(s) of individuals and these are:
- The individual’s current stage of development.
- Gender – men and women may experience and express grief differently.
- Interpersonal relationships and social support networks.
- Type and significance of the loss.
- Culture and ethnicity.
- Spiritual and religious beliefs and practices.
- Prior experience with loss.
- Socioeconomic status.
Manifestations of Grief Reactions
We can usually recognize when someone is experiencing the grief process in a way that is “standardized” within our society and we can develop ways in which we can work with a person who is in this somewhat standardized process in that:
- This grief is considered uncomplicated.
- Emotions can be negative, such as anger, resentment, withdrawal, hopelessness, and guilt but should change to acceptance with time.
- Some acceptance should be evident by 6 months after the loss.
- Somatic complaints can include chest pain, palpitations, headaches, nausea, changes in sleep patterns, and fatigue.
Having a grief reaction that occurs before an impending loss is viewed as something that is normal and understood. It is a way of maintaining the person’s ability to cope because:
- This grief implies the “letting go” of an object or person before the loss, as in a terminal illness.
- Individuals have the opportunity to start the grieving process before the actual loss.
Factors That Can Increase an Individual's Risk for Dysfunctional Grieving
It is anticipated that a person who is grieving may go through the normal and/or anticipatory stages of the grieving process and that the factors influencing, loss, grief, and coping ability will not impact upon them detrimentally. However, there are certain factors that might interrupt the normal/anticipatory grieving process and produce in the individual a form of dysfunctional grieving. The factors that can increase an individual’s risk for this are:
- Being exceptionally dependent upon the deceased
- A person dying unexpectedly at a young age, through violence or in a socially unacceptable manner
- Inadequate coping skills or lack of social supports
- Lack of hope or preexisting mental health issues, such as depression or substance use disorder
When the grieving process does not follow a normal or anticipated pattern it may become an existential threat for the person who is grieving. The characteristics of complicated grief are:
- Unresolved or chronic grief is a type of complicated grief.
- This grief involves difficult progression through the expected stages of grief.
- Usually, the work of grief is prolonged. The manifestations of grief are more severe, and they can result in depression or exacerbate a preexisting disorder.
- The client can develop suicidal ideation, intense feelings of guilt, and lowered self‑esteem.
- Somatic complaints persist for an extended period of time.
Disenfranchised grief is a type of grief that is not recognized by society and is a type of hidden sorrow. It is characterized by the following:
- There is an inability to share the grief, and it remains private.
- This grief entails an experienced loss that cannot be publicly shared or is not socially acceptable, such as suicide and abortion.
Nurses have to deal with people who are in the grieving process, either when a client they are caring for has died or when dealing with the family and friends of a client in another facility but the nurse has ongoing contact with people who are in the grieving process.
The key nursing intervention in relation to the grieving process is for the nurse to facilitate mourning. There are a number of strategies that the nurse can put in place to assist and these include:
- Grant time for the grieving process.
- Identify expected grieving behaviors, such as crying, somatic manifestations, and anxiety.
- Use therapeutic communication related to the client’s stage of grief. Name the emotion the client is feeling. For example, the nurse can say, “You sound as though you are angry. Anger is a normal feeling for someone who has lost a loved one. Tell me about how you are feeling.”
- Use active listening, open‑ended questions, paraphrasing, clarifying, and/or summarizing, while using therapeutic communication.
- Use silence and personal presence to facilitate mourning.
- Avoid communication that inhibits the open expression of feelings, such as offering false reassurance, giving advice, changing the subject, and taking the focus away from the grieving individual.
- Assist the grieving individual to accept the reality of the loss.
- Support efforts to “move on” in the face of the loss.
- Encourage the building of new relationships.
- Provide continuing support. Encourage the support of family and friends.
- Assess for evidence of ineffective coping, such as a client refusing to leave the home months after his partner died.
- Share information about mourning and grieving with the client, who might not realize that feelings, such as anger toward the deceased, are expected.
- Encourage attendance at bereavement or grief support groups. Provide information about available community resources.
- Initiate referrals for individual psychotherapy for clients who have difficulty resolving grief.
- Ask the client whether contacting a spiritual advisor would be acceptable, or encourage the client to do so.
- Participate in debriefing provided by professional grief and mental health counselors.
Palliative care is a term that is known in society but is often misunderstood. Palliative care is specialized care for people with serious illness, usually those who are requiring end-of-life care. This type of care is focused upon providing relief from the symptoms and stress of that serious illness. The goal is to improve the quality of life for both the patient and family. Palliative care is provided by specially training doctors, nurses and other specialists to provide an extra layer of support. This type of care is appropriate at any age and any stage of a serious illness and it may be provided along with curative treatments (GetPalliativeCare.org, 2017). The nurse has an important role to play as a member of the palliative care team and the following points relating to palliative care are important to understand:
- The nurse serves as an advocate for the client’s sense of dignity and self‑esteem by providing palliative care at the end of life.
- Goal is to learn to live fully with an incurable condition.
- Palliative care improves the quality of life of clients and their families facing end‑of‑life issues.
- Palliative care interventions are primarily used when caring for clients who are dying and family members who are grieving. Assessment of the client’s family is\ very important as well.
- Palliative care interventions focus on the relief of physical manifestations (such as pain) as well as addressing spiritual, emotional, and psychosocial aspects of the client’s life.
- Palliative care can be provided by an interprofessional team of physicians, nurses, social workers, physical therapists, massage therapists, occupational therapists, music/art therapists, touch/energy therapists, and chaplains.
- Hospice care, as a comprehensive care delivery system, can be performed in a variety of settings and is implemented when a client is not expected to live longer than 6 months. Further medical care aimed toward a cure is stopped, and the focus becomes enhancing quality of life and supporting the client toward a peaceful and dignified death.
Nurses work directly with the client to maximize their use of palliative care options by:
- Determining the client’s sources of strength and hope.
- Identifying the desires and expectations of the client and family for end‑of‑life care.
Characteristics of Discomfort
An important part of the nurse’s role in palliative care is in identifying discomfort and anticipating factors that may cause discomfort:
- Nausea or vomiting
- Diarrhea or constipation
- Urinary incontinence
- Inability to perform ADLs
Manifestations of Approaching Death in the Palliative Care Client
Nurses are one of the few professionals to continue to work with, and care for, clients as death approaches. When delivering care the nurse must be able to recognize changes that the client is going through as end-of-life approaches. The nurse should therefore be aware of these changes:
- Decreased level of consciousness
- Muscle relaxation of the face
- Labored breathing (dyspnea, apnea, Cheyne‑Stokes respirations), “death rattle”
- Hearing is not diminished
- Touch diminished, but client is able to feel the pressure of touch
- Mucus collecting in large airways
- Incontinence of bowel and/or bladder
- Mottling (cyanosis) occurring with poor circulation
- Pupils no longer reactive to light
- Pulse slow and weak and blood pressure dropping
- Cool extremities
- Decreased urine output
- Inability to swallow
As death approaches for the client the nurse should:
- Promote continuity of care and communication by limiting assigned staff changes.
- Assist the client and family to set priorities for end‑of‑life care.
The provision of care does not cease in the end-of-life phase. The nurse has a professional responsibility to ensure that care and comfort is continually provided. The range of strategies that the nurse should employ to ensure adequate care for the client and these include:
- Give priority to controlling findings.
- Administer medications (such as morphine) that manage pain, air hunger, and anxiety.
- Perform ongoing assessment to determine the effectiveness of treatment and the need for modifications of the treatment plan, such as lower or higher doses of medications.
- Manage adverse effects of medications.
- Reposition the client to maintain airway patency and comfort.
- Maintain the integrity of skin and mucous membranes.
- Provide caring touch (holding the client’s hand).
- Provide an environment that promotes dignity and self‑esteem.
- Remove products of elimination as soon as possible to maintain a clean and odor‑free environment.
- Offer comfortable clothing.
- Provide careful grooming for hair, nails, and skin.
- Encourage family members to bring in comforting possessions to make the client feel at home.
- If appropriate, encourage the use of relaxation techniques, such as guided imagery and music.
- Promote decision‑making in food selection, activities, and health care to give the client as much control as possible.
- Encourage the client to perform ADLs, as they are able and willing to do so.
Apart from the nurse providing physical care as the client approaches death, there are various resources that can be used to assist the client:
- Use an interprofessional approach.
- Provide care and foster support to the client and family.
- Use volunteers when appropriate to provide nonmedical care.
- Use therapeutic communication to develop and maintain and facilitate communication between the client, family, and the provider.
- Facilitate the understanding of information regarding disease progression and treatment choices.
- Facilitate communication between the client, the family, and the provider.
- Encourage the client to participate in religious practices that bring comfort and strength, if appropriate.
- Assist the client in clarifying personal values in order to facilitate effective decision‑making.
- Encourage the client to use coping mechanisms that have worked in the past.
- Be sensitive to comments made in the presence of clients who are unconscious because hearing is the last sensation lost.
Prevention of Abandonment and Isolation
The client who is nearly end-of-life will have many fears and apprehensions that the nurse will need to deal with. There are a range of interventions that the nurse may use to prevent or minimize feelings of abandonment and isolation in the client. These include:
- Prevent the fear of dying alone.
- Make your presence known by answering call lights in a timely manner and making frequent contact.
- Keep the client informed of procedure and assessment times.
- Allow family members to stay overnight.
- Determine where the client is most comfortable, such as in a room close to the nurses’ station.
Support for the Grieving Family
When the client has died there is a range of grief reactions within the family and/or friends that the nurse may need to address. There are a number of interventions that the nurse can use with those experiencing grief and these include:
- Suggest that family members plan visits to promote the client’s rest.
- Ensure that the family receives appropriate information as the treatment plan changes.
- Provide privacy so family members have the opportunity to communicate and express feelings among themselves without including the client.
- Determine family members’ desire to provide physical care while maintaining awareness of possible caregiver fatigue. Provide instruction as necessary.
- Educate the family about physical changes to expect as the client moves closer to death.
- Allow families to express feelings.
Care for the Caregiver
It is important for caregivers to take care of themselves. However, caregivers often feel guilt when they take time away from their loved one. It can be difficult for them to ask for help from another person or family member. Read the following National Cancer Institute publication, Caring for the Caregiver, at https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf . Using this publication and material in this CNE course complete the following activity.
Develop a 2 page, front and back brochure that highlights how important it is for caregivers to take care of themselves so they can better take of their loved one. Include coping with grief, learning how to ask for help, and accepting help from others. Also focus on stress-relief and health-maintaining strategies as you suggest ways to balance one’s needs.
Care of the client continues after the client has died. The nurse has an ongoing responsibility to act professionally and continue to be actively involved with the client and family/friends. Issues relating to postmortem care are:
- Nurses are responsible for following federal and state laws regarding requests for organ or tissue donation, obtaining permission for autopsy, ensuring the certification and appropriate documentation of the death, and providing postmortem (after‑death) care.
- After postmortem care is completed, the client’s family becomes the nurse’s primary focus.
1. Care of the Body
The nurse continues to work with the client after death occurs. The nurse has a unique role in relation to caring for the body of a client:
- Providing care with respect and compassion while attending to the desires of the client and family per their cultural, religious, and social practices. Check the client’s religion and make attempts to comply.
- Recognizing that the provider certifies death by pronouncing the time and documenting therapies used, and actions taken prior to the death.
2. Viewing Considerations
There are a number of issues that the nurse should be aware of in relation to viewing of the body that include:
- Asking the family whether they would like to visit with the body, honoring any decision.
- Clarifying where the client’s personal belongings should go: with the body or to a designated person.
- Adhering to the same procedures when the client is an infant, with the following exceptions:
- Swaddle the infant’s body in a clean blanket.
- Transport the infant in the nurse’s arms or in an infant carrier based on facility protocol.
- Offer mementos of the infant (identification bracelets, footprints, the cord clamp, a lock of hair, photos).
3. Preparing the Body for Viewing
The family may wish to view the both and the nurse can assist in the process by:
- Maintaining privacy.
- Removing all tubes (unless organs are to be donated or this is a medical examiner’s case).
- Removing all personal belongings to be given to the family.
- Cleansing and aligning the body supine with a pillow under the head, arms with palms of hand down outside the sheet and blanket, dentures in place, and eyes closed.
- Application of fresh linens with absorbent pads on bed and a gown.
- Brushing/combing the client’s hair. Replace any hairpieces.
- Removing excess supplies, equipment, and soiled linens from the room.
- Dimming the lights and minimize noise to provide a calm environment.
After the viewing of the body is complete the nurse will need to:
- Apply identification tags according to facility policy.
- Complete documentation.
- Remain aware of visitor and staff sensibilities during transport.
5. Organ/Tissue Donation
There will be policies and procedures in place at a local and state level that relate to organ and tissue donation and are respectful of the wishes of the client. The nurse will need to:
- Recognize that specifically trained personnel must make requests for tissue and organ donations.
- Provide support and education to family members as decisions are being made. Use private areas for any family discussions concerning donation.
- Be sensitive to cultural and religious influences.
- Maintain ventilation and cardiovascular support for vital organ retrieval.
6. Autopsy Considerations
Depending upon the circumstances surrounding the death of the client and autopsy may need to be performed. In relation to this:
- The provider typically approaches the family about performing an autopsy.
- The nurse’s role is to answer the family members’ questions and support their choices.
- Autopsies can be conducted to advance scientific knowledge regarding disease processes, which can lead to the development of new therapies.
- The law can require an autopsy to be performed if the death is due to homicide, suicide, or accidental death, or if death occurs within 24 hr of hospital admission.
- Most facilities require that all tubes remain in place for an autopsy.
- Documentation and completion of forms following federal and state laws typically includes the following:
- Who pronounced the death and at what time.
- Consideration of and preparation for organ donation.
- Description of any tubes or lines left in or on the body.
- Disposition of personal articles.
- Who was notified, and any decisions made.
- Location of identification tags.
- Time the body left the facility and the destination.
The Care of Nurses Who Grieve
Caring long‑term for clients can create personal attachments for nurses and all client deaths have the potential to impact those who have cared for the client. Nurses need to be aware of their own vulnerabilities in relation to this aspect of their job and nurses can use coping strategies:
- Going to the client’s funeral.
- Communicating in writing to the family.
- Attending debriefing sessions with colleagues.
- Using stress management techniques.
- Talking with a professional counselor.
Palliative Care Case Study
Case Study #1 This CNE activity is not graded and will not impact the score you receive for correctly answered items.
The nurse is caring for a 68-year old client who is terminally ill.
1. What signs and symptoms would they expect to see that would indicate that the client is nearly the end of his life?
2. What do you consider to be the five (5) most important things that the nurse can do to provide for the physical care needs of the client at this time?
3. Describe five (5) approaches or resources that can be used to assist with the psychosocial care of this client.
4. What measures would you put in place to prevent this patient from feeling abandoned or isolated?
- American Association of Colleges of Nursing (AACN) (2016) CARES: Competencies And Recommendations for Educating Undergraduate Nursing Students Preparing Nurses to Care for the Seriously Ill and their Families. Retrieved 24 November 2017.
- Berman, A., Snyder, S. & Frandsen, G. (2016). Kozier & Erb’s Fundamentals of nursing: concepts, Process, and Practice (10th Ed.). Hoboken, NJ: Pearson.
- Fundamentals for Nursing Review Module Edition 9.0 2017 Assessment Technologies Institute, LLC.
- GetPalliativeCare (2017) Retrieved 24 November 2017
- Lowdermilk, D., Perry, S.E., Cashion, K., & Rhodes Alden, K. (2016). Maternity and women’s health care (11th Ed.). St. Louis, MO: Elsevier.
- National Cancer Institute. (2014) Caring for the Caregiver. Retrieved from https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pPN Mental Health Nursing Review Module Edition 10.0 2017 Assessment Technologies Institute, LLC.
- Potter, P.A., Perry, A. G., Stockert, P. A. & Hall, A.M. (2017). Fundamentals of nursing (9th Ed.). St. Louis, MO: Elsevier.