Navigating Difficult End of Life Conversations

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Introduction   

Talking about death is generally difficult for the average person. It is even considered taboo in some cultures or situations.  For some nurses, having end of life conversations is a routine part of the profession. A hospice nurse, for example, carries the responsibility of managing care for a dying patient, and ultimately informing the patient’s family that death is imminent.

A lack of training, experience, or confidence in this area could result in poor delivery, unrealistic expectations, and an overall negative dying experience. Most people do not have experience or even a baseline when it comes to death and dying. This makes end of life conversations much more important in the delivery of patient care.  

Perspectives About Dying and Death (Philosophical, Psychological, and Spiritual) 

Philosophical 

The human experience of death and dying is not one sided. On the contrary, there are many things to be considered to understand it fully. This goes beyond a scientific approach. An understanding of philosophical reasoning related to death is imperative to provide a thorough explication of the human dying experience. Historically, death has been an intrinsic part of life throughout various civilizations. 

Ancient Egyptians spent much time preparing for the next life. Life was perceived as a dream that passed quickly. Death was viewed as eternal. Egyptians believed that the dead would make their way over to The Kingdom of Orisis, where they would spend eternity. 

Ancient Greek civilization also viewed death in a particular light. According to San Filippo, “Greeks perceived death as a release of the soul from the body. The soul, which was considered to be part of the mind, was believed to be immortal. It was considered that the soul lived before the body and would live again in another life” (1). 

Lastly, it has been noted that when it comes to fearing death, people create philosophies and theologies due to an inability to visualize our own death and afterlife.  

Psychological 

The psychological aspect of death is just as important as the physical. The thought of death alone has the potential to evoke various memories and feelings. You will typically find that a person either accepts or fears death (positive outlook vs negative outlook). This can be a fear of suffering, pain, or of the unknown. These views are typically formed based on past experiences with death. 

 Often, a person may have no underlying baseline when it comes to dying or death. That first experience with death can potentially shape someone’s entire perspective. Fearing death could be attributed to a fear of the unknown, lack of relatable experience, a negative experience, or a lack of communication regarding death, due to a cultural taboo, for example.  

On the other hand, things like faith, positive experiences, and imminent death may cause someone to be more accepting of death. Often, someone facing imminent death may be forced to think about it and come to terms with it. In a study of terminally ill patients facing death, “The participants were afraid of death and earnestly desired to live but felt that death was imminent. To escape their distress, they attempted to accept the situation by thinking that all lives are finite, and death had to be accepted” (2). This is an example of coming to terms with an impending death and accepting it. 

Spiritual 

Spiritual perspectives on death should be considered when discussing views on dying. History shows that humans have long held beliefs that life does end when the body dies. Many tend to believe that once a person dies, their soul is then freed, and can go on to another life or be reincarnated into someone or something else. Religious ideologies contain a vast amount of knowledge and wisdom regarding death. “Religion and spirituality help individuals make sense of what awaits them near the end of life and help the dying cope with their terminal condition” (7).  

What happens after death may vary from one religion to the next. Many religions also have a heaven or heaven like final place where the deceased can rest and be with other who have also died. One of the oldest ideologies of human history is the belief that there can be life after death. 

Impact on Nurses 

Imagine working as a hospice nurse.  Your sole purpose is to provide end-of-life care for terminally ill patients. This includes providing information on what to expect at the end of life. At any given time, you have patients that could be imminently dying.  

You are a source of knowledge and comfort for a patient and their family during this time. In the end, you will likely be there when the patient takes their last breath. How can one prepare to handle this scenario time and time again? Should a nurse feel sadness for a patient that was expected to die, or should they emotionally separate themselves? 

The latter may prove hard to do. The reality is that nurses are frequently exposed to death and dying in a variety of settings. A patient’s dying process can be planned or not and this distinction may mean different things for different people. Typically, nurses are taught skills to help prevent death.  

This may be a hard thought process to overcome when the goal is not curative, but comfort focused. These patient interactions help to shape a nurse’s feelings on death and dying. “Nurses are frequently exposed to dying patients and death in the course of their work. This experience makes individuals conscious of their own mortality, often giving rise to anxiety and unease.  

Nurses who have a strong anxiety about death may be less comfortable providing nursing care for patients at the end of their life” (3).  This ‘death’ anxiety could lead to disastrous outcomes for both the nurse and the patient. Nurses should be aware of their own thoughts and attitudes towards death, and how these could affect their ability to provide patient care. 

Caring for the dying involves both skill and emotional support from nurses. Younger nurses and nurses with less experience with death may have greater difficulty caring for dying patients. End of life education and an introspective look at oneself are imperative when it comes to providing quality care. “Nurses’ professional experience is positively correlated with their position, professional level (rank), EOL care experience, competence in EOL, and another knowledge. 

 Nurses who have a positive attitude seem more likely to have more competence in dealing with patients’ symptoms at EOL and better knowledge of EOL care (3). The more palliative knowledge nurses had, the more competence they felt. Moreover, competence dealing with patients’ symptoms in EOL care was correlated with older nurses” (8). Positive conversations about death and dying usually lead to a positive dying experience. 

 To reach this point, nurses and other healthcare professionals need to know how to have these conversations. In a society that is so focused on the living, receiving education on death can be difficult. When death is perceived as a part of life, only then will people feel more comfortable talking about it.  

Communication Strategies 

Many people are uncomfortable talking about death and dying and tend to shy away from such conversations. This may also be true for nurses. Talking about death should not be a formidable task. Nurses should be able to comfortably implement these conversations in their practice when needed. Effective communication is imperative throughout a patient’s trajectory.  

Conversations about death and dying can impact patient care. “Research has shown that talking about and planning the EOL is important for how the final days in a patient’s life may play out and is associated with reduced costs as well as a higher quality of care in the final weeks of life” (4). In a society so focused on life, it may be difficult for nurses and other health professionals to obtain the skills needed to confidently speak with patients about death. 

To effectively talk to patients about death, nurses should first be willing to initiate and discuss the topic. There are important strategies to remember when talking about the end of life. “Qualitative research on the end of life has revealed that medical personnel should consider the following strategies when conducting EOLD: open and honest conversation, setting treatment goals, and balancing hope with reality” (13).  

Patients should also be encouraged to express their thoughts, fears, and to ask questions. It is also important to be honest and forward with patients. No “beating around the bush”. This means using words like “dying” and “death” while having these conversations.  

One communication strategy, VALUE, “recommends to value and appreciate statements of family members, acknowledge their emotions, as well as to listen and ask questions to understand who the patient was as a person” (9). Nurses should keep the following in mind: a patient’s comfort level with death, goals of care, expectations, and cultural factors. Having this knowledge will help to guide the conversation.  

Lastly, when a nurse feels confident and exhibits calmness while talking about death, a patient will more than likely feel the same way. 

Stages of Grief 

Nurses are not immune from experiencing grief or loss. We mourn personally and we mourn alongside our patients and their families. “Grief and loss are something that all people will experience in their lifetime. The loss may be actual or perceived and is the absence of something that was valued. An actual loss is recognized and verified by others while others cannot verify a perceived loss.  

Both are real to the individual who has experienced the loss. Grief is the internal part of the loss; it is the emotions related to the loss” (4). Grief allows a person to begin to deal with the pain associated with loss and to heal. There are five stages of grief which were identified in Dr. Elisabeth Kübler-Ross in her book Death and Dying.  

1. Denial: This stage Is not necessarily about denying that the loss happened. Instead, it is more about denying the feelings associated with the loss. Denial lets us face our feelings of grief. “As an individual is able to accept that this loss is their reality, they will be able to move into the healing process and denial will begin to diminish” (5). 
2. Anger: A grieving person may feel anger towards a variety of people associated with the loss. This is a normal and a necessary part of the healing process. “Under the anger is the individual’s pain. Anger provides structure, and that is better than preceding numbness. It can be a challenge for some to feel the anger; sometimes it is easier to try and suppress the anger. Feeling anger and addressing anger is part of the grieving process” (5). 
3. Bargaining: Grieving people may begin to say things to themselves like, “If this__, then this __”, or “I will do anything if you take the hurt away” (5). This stage may occur at any point in the grief process. Once this step is reached, the person can begin to move through the stages in different ways.  
4. Depression: This stage involves a realization that the situation is real. “Empty feelings come forward, and one’s grief moves in on a deeper level than before. This type of depression is not a sign of mental illness; although reaching out for help may be the right step. It is an appropriate response to a great loss. An individual may withdraw from their daily life activities, and they may feel a fog of   intense sadness” (4). Depression after a major loss is normal and necessary in the healing process.  
5. Acceptance: Entering this final stage does not mean one is completely okay with what has happened. In fact, one may never be as they once were prior to the loss. “Acceptance, as a stage, is about accepting that this is their new reality, and it is permanent. Life cannot go on as it once did, but through acceptance, life can and will go on” (5). Individuals in this stage must realize that change is necessary to adjust to the new normal. 

Not everyone experiences grief in the same way. Grief is a very personal experience that affects people in different ways. Nurses should be familiar with the stages of grief to be able to offer optimal patient care to grieving patients and their families. This includes recognizing signs of depression and possible suicidal ideation, providing empathy, compassion, education, and resources to those in need. 

End of Life Process 

Phases of Dying 

Although everyone experiences death differently and on their own terms, there are two main pathways that most people take before dying. The dying process can be broken up into two phases: the transitioning phase, and the actively dying phase. The amount spent in each phase varies from person to person. 

The transitioning phase usually begins 2-3 weeks prior to death. Major changes in function and the ability to do activities of daily life are observed during this time. Patients may even begin falling prior to entering this phase. Becoming bedbound is common as one will begin to spend most of their time sleeping. 

This means decreased responsiveness, less interest in normal activities and hobbies, decreased interaction with family and friends, and an overall decline in one’s interest in external factors. It is possible to be roused during this phase, but this may only be possible in short intervals. It is not uncommon for transitioning patients to speak to or about loved ones that have already passed away. They may even report seeing deceased family in the room with them (11). 

This should not be feared and is an important part of a person’s dying process. Incontinence may also begin during this time and briefs will be needed. Perhaps one of the most noticeable and difficult changes to witness, especially by friends and family, is changes in appetite. Patients will begin to show less interest in food and liquids. A greater difficulty swallowing will become apparent. “Refusal of food and fluid by a dying person is a common occurrence, particularly as the body slowly shuts down, and this may be the evidence signifying an actively dying process rather than starvation” (11). 

 Lastly, symptoms like restlessness, agitation, and pain may arise and detract from one’s comfort level. Although most patients will spend about two weeks transitioning, time can vary from days to weeks. The transitioning phase can also be skipped altogether, depending on the person. 

Once the transitioning phase has concluded, the actively dying phase will begin. Actively dying immediately precedes death. This phase is usually short, lasting about 48 hours. Once actively dying, death is imminent, and a patient is expected to pass away at any moment. This phase is markedly different from the previous phase, and symptoms tend to become more apparent. “The following five changes constitute objective evidence of the end of life: diminished daily living performance, decreased food intake, changes in consciousness and increased sleep quantity, worsening of respiratory distress, and end-stage delirium” (12). 

One key difference is one’s ability to response to tactile or verbal stimuli. The actively dying patient is obtunded and no longer responds to external forces.  There could be slight reactions, but nothing meaningful. This is a comatose state.  

There are many observable changes, including changes in vital signs. Blood pressure begins to drop, heart rate speeds up and eventually slow, respiratory rate picks up, and temperature may become elevated. Respiratory differences tend to be the most common observable changes. Cheyne-Stokes may occur, and the overall breathing pattern can be very irregular. Apnea is also common (11). 

Many patients experience what is known as the “death rattle”.  This very noticeable sound is due to an accumulation of secretions in the upper airway. This is a hallmark of the actively dying phase, but it is not experienced by everyone. “Death rattle is a strong predictor of imminent death, and nearly 80% of people die within 48 hours after its onset” (11).  

Skin changes also occur. The body may become cool to touch, cyanosis may develop in the nail beds of fingers and toes, and mottling can occur usually beginning in the lower extremities and later spreading to other parts of the body. Skin may also become very pale. Urine output will decrease and become concentrated as evidenced by an amber color. 

Nursing Assessment and Care 

Since there are so many drastic changes observed during the transitioning phase, proper education is crucial for caregivers. Nurses should reassure them that what the patient is experiencing is normal and to be expected. “At the end of life, most patients are in a state of lethargy, wherein their consciousness progressively declines, and sleep duration increases; therefore, it is necessary to provide appropriate explanations to patients and their families so that they can accept these symptoms as part of the natural end-of-life process” (12). 

Family members usually try to wake the sleeping transitioning patient and have them attempt activities that could be done in the past. This is dangerous for the pt and can lead to injuries and more agitation. Becoming bedbound is a major change and puts the patient at risk for pressure injuries and increased pain. Fragile skin combined with new episodes of incontinence are topics that should be discussed, and proper supplies should be used. 

Other potential barriers to a peaceful transitioning period are force feeding and aspiration. Nurses should provide education on what is acceptable and needed at this point. Patients will not die of hunger or lack of water. Allowing the patient to eat and drink small amounts is okay (12). 

This amount will decrease as the body starts shutting down. Ice chips can be used while the patient is still alert. Utilizing mouth swabs with water is enough to hydrate the oral cavity and keep the patient comfortable until the end. During this time, symptoms can seemingly come out of the blue.  

A once calm patient can become highly agitated in a short period of time. Medications should be added timely to ensure that the patient has a peaceful death.  Information on medication and interventions to control uncomfortable end of life symptoms like pain, agitation, and restlessness should be provided to caregivers. Hospice patients, for example, have a comfort kit with various medications to use during this time.  

Medications can be used as needed or scheduled to keep patients comfortable. (12). As the patient enters the actively dying phase and becomes less alert and aware, it is important that friends and family continue to talk to the patient and keep conversations positive around the patient. Hospice nurses, for example, are sure to tell caregivers that hearing is the last thing to go, so they should continue to speak to their loved one. Since vital signs start to become abnormal, reassurance is usually needed to keep family comfortable.  

Not all vital signs need to be taken in the final stages. Taking blood pressure, for example, could cause discomfort. Death education related to respiratory changes is imperative. “Abnormal breathing patterns such as shallow breathing sound become increasingly common starting 1 week before death” (12). 

Caregivers should be informed that breathing too fast or too slow at this point is not an emergency and there are things that can be done to promote comfort like applying oxygen, keeping the head of the bed upright, and keeping the room cool. Medications can also be given to decrease the death rattle. It should be noted that patients do not experience discomfort from the death rattle.  

Lastly, not having a bowel movement or passing urine during the last few days of life is normal and interventions are not needed. Education and support are especially important during the final phases of life. With their peaceful words and deep knowledge base, nurses can be instrumental in facilitating a peaceful death.  

Resources and Support 

Planning, coordinating, and executing quality end of life care can be challenging for health care workers. This period can also be one of the most challenging times for both patients and their loved ones. There are available resources for health care workers, patients, and their loved ones that provide information on end-of-life care. 

Hospice care is an invaluable resource and source of support. This is available to terminally ill patients with a life expectancy of 6 months or less.” Hospice care is the term given to the care provided when a patient is given a prognosis of death within 6 months, and they do not pursue curative treatments They focus on improving the quality of life which can mean many things” (10).   

Care can be provided in any setting that a patient calls home. The hospice team includes a medical director, registered nurse, chaplain, social worker, home health aide, and often a nurse practitioner. Symptoms and care can be managed at home with the help of covered medications, supplies, and medical equipment. Hospice allows patients to reach their goal of dying peacefully at home. A bereavement team also provides support during the process. (10?) 

Palliative care, another form of comfort care, can also be utilized to maintain comfort at the end of life. Unlike hospice, patients receiving palliative care do not need to have a life expectancy of 6 months or less. “Research found that timely EOL care discussions allowed family members to make use of hospice and palliative care services sooner and maximize their time with the patient” (6). 

Nurses should be educated in other end of life resource topics such as advanced directives, POLST (Physician Orders for Life Sustaining Treatment), and Durable Medical Power of Attorney. Looking ahead and having meaningful discussions regarding end-of-life planning can help prevent the stress of needing to address these things when death is imminent. 

Conclusion

End of life conversations have a profound impact on not only patient care, but also on the dying process itself. Research shows that when implemented appropriately, these conversations improve patient relationships with healthcare workers, lead to better outcomes, and allow for a more positive dying experience. Nurses play a critical role in end-of-life processes in many different settings. With education, practice, experience, and confidence, nurses can incorporate conversations about death and dying to provide quality care. 

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