It is a common question among healthcare providers whether patients actually know or have an awareness that they are dying. This is an important consideration when providing end-of-life care and support to patients and their families. Studies have shown that patients often do have some level of awareness of their declining health and impending death, but the accuracy and extent of this awareness can vary greatly between individuals. As healthcare providers, being aware of a patient’s understanding of their prognosis can help guide discussions around goals of care and improve quality of life in a patient’s final days.
Signs a Patient Knows They Are Dying
There are a variety of ways that patients may demonstrate or communicate an awareness that they are dying or that their health is declining. Some of the most common signs include:
Direct verbal communication
Some patients may directly tell their healthcare providers or loved ones that they know they are dying or feel like they do not have much time left. They may make comments about not being around much longer or not being able to do certain things in the future due to their health. These types of direct verbal communications clearly indicate an awareness of impending death.
Indirect verbal cues
More indirect or subtle verbal cues may also suggest a patient knows their prognosis. For example, they may talk about wanting to resolve unfinished business, tie up loose ends, or make amends with estranged loved ones. They may want to discuss their funeral plans and arrangements. These types of conversations often signify an awareness that time is limited.
Withdrawal from worldly affairs
Patients nearing the end of life may start withdrawing from worldly responsibilities and affairs. They may stop worrying about finances, business matters, household chores, and other day-to-day activities they previously engaged in. This narrowing of focus to the present and letting go of future plans and responsibilities can be an indicator that the patient recognizes their declining health status.
Focus on closure
In addition to withdrawal from worldly affairs, patients may increasingly focus their mental and emotional energy on finding closure in their relationships with loved ones. They may frequently express their love for family and friends, want to reminisce about fond memories, tie up “loose ends” in important relationships, and have meaningful conversations about the things most important to them. Finding this sense of closure is often very important to individuals who know they are approaching the end of life.
Physical decline
In many cases, patients are aware of their own declining physical abilities, strength, stamina, and overall health. If patients are having to rely more on others for care and basic activities of daily living, they likely recognize that their health is failing. However, it should not be assumed that just because someone is physically declining that they necessarily have insight into the terminal nature of their condition. The mental and emotional awareness requires more than just recognition of physical changes.
Making preparations
Making practical and logistical preparations for death can be a sign that someone recognizes their health is in serious decline. This may include activities like arranging their finances and estate, giving away possessions, making their funeral plans, or settling their will or advance directives. Making these preparations helps provide a sense of control and closure when one knows death is approaching.
Factors Affecting Insight into Terminal Condition
While some patients do exhibit signs of awareness about their terminal condition, others may have very little insight into the severity of their prognosis. A number of factors can influence the accuracy of patients’ awareness and understanding of their health status and risk of dying:
Communication with healthcare providers
The information and prognosis communicated by doctors and other healthcare providers greatly impacts patients’ level of awareness. If conversations about prognosis and end-of-life planning are avoided, patients are left to fill in the gaps about the severity of their illness themselves. Clear, compassionate communication about prognosis, treatment options, and expectations can help increase patients’ insight and alignment with the medical team regarding their condition.
Cognitive function
Cognitive deficits such as delirium or dementia can impair a patient’s ability to accurately understand and retain information about their health status and prognosis. Even mild cognitive changes associated with illness, medications, fatigue, or aging can limit a patient’s insight into their terminal condition. Assessing for cognitive function is important for determining how much a patient is able to comprehend about their situation.
Denial and avoidance
Some patients use denial or avoidance to cope with distressing information about a poor prognosis. By denying, minimizing, or ignoring the severity of their condition, some patients are able to reduce anxiety and maintain a sense of hope in the face of terminal illness. However, this comes at the expense of having realistic awareness about the trajectory of their health. Gentle exploration and listening can sometimes reveal insights into the patient’s true understanding.
Disease process
The effects of certain illnesses on the body and mind can directly impact a patient’s level of awareness. For example, many terminal cancers that metastasize to the brain can cause neuropsychiatric effects like confusion, delirium, and cognitive impairment. Other diseases that are more indolent and slowly progressive may not always be recognized by patients as being imminently life-limiting. Each disease process affects insight in different ways.
Personality and coping style
Individual personality characteristics and typical coping styles influence awareness. Some patients have personality traits like optimism or denial that shape how they perceive and react to prognostic information. Other patients tend to confront difficult news in a more direct, realistic way based on their personal disposition. Understanding the patient’s baseline coping mechanisms helps gauge their insight into terminal disease.
Benefits of Recognizing Impending Death
Despite the challenges, there are significant benefits when patients do have awareness that they are dying. These include:
Participating in care decisions
Patients who understand they are dying have the opportunity to make informed decisions about their care, such as whether to continue with curative treatment or focus on symptomatic relief at the end of life. Their insight allows them to participate actively in shared decision-making.
Finding closure and saying goodbye
Recognizing that time is limited allows patients to find closure in important relationships and say goodbye to loved ones on their own terms. This facilitates meaningful conversations and connections in the final stage of life.
Engaging in legacy work
Knowing death is approaching provides an opportunity for legacy work such as creating memoirs, recording messages for loved ones, or putting one’s affairs in order. This helps bring a sense of purpose and meaning to the dying process.
Participating in rituals
Patients who are aware they are dying can make the most of important cultural, religious, community, and family rituals near the end of life. Insight into their prognosis allows them to engage in and benefit from these meaningful rituals.
Making the most of remaining time
Awareness of limited time left gives patients the impetus to enjoy and participate in the activities and experiences most meaningful to them in their final days. Knowing one is dying can help prioritize and maximize enjoyment of remaining time.
Barriers to Accepting Impending Death
Despite some benefits, fully accepting and acknowledging an impending death can be very difficult and is not solely a rational process. Common barriers patients face include:
Fear
Confronting one’s mortality naturally provokes fear – fear of the dying process, fear of the unknown after death, fear of separation from loved ones. This fear motivates denial and avoidance.
Unfinished business
Patients may struggle accepting death if they feel obligations to loved ones like children or spouses who depend on them. They may also have tasks and goals they feel the need to complete.
Cultural taboos
Some cultures shun open discussion about death, dying, and grief. This can inhibit patients from acknowledging an terminal prognosis and engage in end-of-life planning.
Hope
Maintaining a sense of hope helps patients cope. This hope can sometimes lead to unrealistic expectations about the likelihood of recovery, negatively impacting acceptance.
Religious beliefs
While religion provides comfort for many patients, some religious ideas about miracles or divine intervention may promote denial of inevitably approaching death.
Grief
Coming to terms with the permanence of death provokes anticipatory grief. Facing the profound emotions can be an overwhelming prospect.
Improving Insight through Communication
Despite challenges, clinicians can use effective communication strategies to help patients gain insight into their prognosis:
Assess readiness
Gauge the patient’s mood, coping style, fears, and expectations. This allows insight into their readiness to discuss prognosis and engage in advance care planning.
Clarify goals
Ask patients about their most important priorities, values, and goals regarding the final stage of their life. This provides essential context for prognostic discussions.
Share information gradually
Gently share prognostic information over multiple conversations, allowing time for absorption and acceptance between discussions.
Acknowledge emotions
Reactions like sadness, fear, and denial are normal. Affirm these emotions and provide empathy, understanding and support.
Give recommendations
Make clear, specific recommendations about prognosis, treatment options, and end-of-life care based on your expertise and experience.
Check for understanding
Ask patients to explain or restate key information about their condition and prognosis in their own words to assess comprehension.
Make space for hope
While realistic, also emphasize that there are still opportunities for meaningful experiences and accomplishments at the end of life.
Conclusion
Whether or not patients have awareness that they are dying has important implications for their care, communication with clinicians, and quality of life as they near death. Insight into prognosis is variable and influenced by many disease, patient, and communication factors. Despite potential barriers, compassionate communication from providers can go a long way to improving patients’ understanding of their terminal condition. This allows patients and families to engage more actively in discussions around care priorities and prepare for the end of life. More research is still needed to better understand patients’ experiences and perceptions during this profound transition.
| Stage of Insight | Patient Behaviors | Care Strategy |
|---|---|---|
| Denial | Minimizing symptoms, unrealistic optimism about prognosis, avoiding discussions about disease | Gently explore readiness for prognostic information, show empathy without confrontation |
| Growing awareness | Increase in practical questions about disease, focus on symptom management, interest in learning more | Answer questions honestly, transition discussions towards prognosis over time |
| Acceptance | Openly acknowledging terminal condition, making practical preparations, initiating discussions about hospice/palliative care | Affirm acceptance, facilitate legacy work and closure, discuss full range of options |