What are illness trajectories?
Illness trajectories describe the time-related decline of functional status across a spectrum of illnesses. Four illness trajectories have been recommended to conceptualize how function declines as diseases advance to death.
What is the typical trajectory of a patient with progressive illness?
Three typical illness trajectories have been described for patients with progressive chronic illness: cancer, organ failure, and the frail elderly or dementia trajectory. Physical, social, psychological, and spiritual needs of patients and their carers are likely to vary according to the trajectory they are following.
What is the trajectory of cancer patients?
This trajectory is most common among patients living with an illness that can be categorized as leading to terminal, such as cancer. Functioning remains fairly high throughout the course of illness and then patients rapidly decline weeks or sometimes even days before death.
Why is it important for nurses to understand illness trajectories?
By understanding illness trajectories, the nurse will be able to develop an individualized plan of care for the patient who is nearing the end of life. Sudden death, terminal illness, organ failure, and frailty are the four most common types of illness trajectories found in end-of-life care.
Why is it important to reevaluate the trajectories of an illness?
Therefore, it is vital that illness trajectories be reevaluated as the condition evolves. In particular, certain patterns such as an abrupt functional decline or frequent hospitalizations may indicate the need to readdress goals of care.
What is the purpose of a trajectory in illness?
Illness trajectories can provide a framework for addressing patient and family expectations of what will happen with regards to their anticipated health. Distinct illness trajectories have been recognized in the medical literature (see Figure 1). This Fast Fact will review the medical evidence of these trajectories as well as their utility as a patient teaching tool.
What is organ failure?
Organ failure: A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations (1). Each exacerbation may result in death but is often survived with gradual deterioration in health and functional status. Timing of death is less certain than in cancer.
How long does it take for cancer to decline?
Multiple studies have supported this trajectory however, the timing of steep decline ranges between 1 to 5 months before death depending on the study (1,5-7). Cancer patients may also experience more predictable patterns ...
What is sudden death?
Sudden Death or Decline: An abrupt change from normal physical function to either death or significant medical disability, often as a result of trauma or an acute cardiopulmonary/neurologic event. Many times there is little or no prior interaction with the health system nor a recognizable pattern of functional decline preceding the event (1,9). Thus, intense displays of shock or anger are common from family members when clinicians break bad news. See Fast Fact #305. Loved ones are at increased risk for depression and complicated grief as they adjust to the new medical reality after the event (17,18).
Should health care providers exercise their own independent clinical judgment?
Health care providers should always exercise their own independent clinical judgment and consult other relevant and up-to-date experts and resources. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling.
Is fast facts medical advice?
Disclaimer: Fast Facts and Concepts provide educational information for health care professionals. This information is not medical advice. Fast Facts are not continually updated, and new safety information may emerge after a Fast Fact is published. Health care providers should always exercise their own independent clinical judgment and consult other relevant and up-to-date experts and resources. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.
What is frailty dementia?
Frailty/dementia: A pattern of dwindling cognitive and/or physical disability that may progress over several years. In the last year of life, 70% of dementia patients require assistance in ≥ 3 activities of daily living, making these patients at increased risk for nursing home placement and caregiver breakdown.
What is spiritual distress in cancer?
Cancer patients may also experience more predictable patterns of spiritual distress with peaks at diagnosis, disease recurrence, and the terminal phase of illness. Organ failure: A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations.
What is sudden death?
Sudden death or decline: An abrupt change from normal physical function to either death or significant medical disability, often as a result of trauma or an acute cardiopulmonary/neurologic event. There is often little or no prior interaction with the health system, nor is there a recognizable pattern of functional decline preceding the event. Families are at increased risk for depression and complicated grief as they adjust to the new medical reality after the event.
Is the timing of death less certain than in cancer?
Timing of death is less certain than in cancer. Patients with congestive heart failure (CHF) and chronic obstructive pulmonary disorder (COPD) are more likely to die in hospital and less likely to receive hospice services.
What Is the Clinical Course of Advanced Cancer?
Kavitha J. Ramchandran, Jamie H. von Roenn, in Evidence-Based Practice in Palliative Medicine, 2013
What Is a Useful Strategy for Estimating Survival in Palliative Care Settings for Persons With Advanced Cancer?
Thomas Carroll, ... Robert Gramling, in Evidence-Based Practice in Palliative Medicine, 2013
What should a palliative care provider consider?
Palliative care providers should consider that a family must deal with crises and losses at multiple points along the illness trajectory and try to understand their history with the disease. Understanding how, as a family, they have been coping and managing the challenges they have encountered up to this point can be valuable in identifying and building on the family's strengths.7
Why is ACP important?
ACP plays an important role in the care of all patients with advanced illness, but becomes even more important in patients who may have multiple advanced illnesses. A new diagnosis of heart failure, for example, represents an important transition in someone’s care and an important opportunity to readdress patients’ goals of care and their ACP documentation. 4 Standard advance directives documents often fail to address the most common scenarios that precipitate end of life for a particular illness. For example, the advanced illness trajectory of heart failure is very different from that of advanced dementia. Providers can use the time of a new diagnosis to assist patients in their understanding of their condition and help to understand their goals and values and accept the significant uncertainty that lies ahead. Yearly discussions regarding advanced care preferences are recommended for patients with heart failure4; the importance of such discussions is only compounded for patients with concurrent oncologic diagnoses. Palliative care consultation (see Box 20.2) to facilitate the honing of advanced directives into a personalized preparedness plan may be beneficial for patients like the ones described in the vignettes, as competing goals of care and prioritization of quality and quantity of life are sometimes challenging to discern. 14 Further research is warranted to see if similar planning can be of benefit to cardio-oncology populations before considering high-risk procedures such as transarterial valve replacement, mechanical circulatory support device implantation, or treatment of secondarily developed hematological malignancy with allogenic stem cell transplantation.
What is palliative care in hospital?
The hospital-based pediatric palliative care program had been introduced to the child and family at an early stage for help with symptom control and for anticipatory guidance. The roles and involvement of the pediatric palliative care team evolved as needed at different points in the child's illness trajectory. The initial role of the team was to establish a therapeutic relationship with his parents and to support the health care staff (e.g., intensive care unit staff and surgeons) in the many discussions that occurred at different decision-making points. As his care evolved toward the end of life, the pediatric palliative care team became more directly involved in planning for how end-of-life care would be transferred to the home, including how the child would be taken off the ventilator.
What are the four trajectories of illness?
Four illness trajectories are: (1) for cancer: a short decline; (2) for heart failure: an episodic decline; (3) for dementia: a prolonged decline; and (4) for acute brain injury: patients who survive the acute stage enter a chronic stage of recovery. In this case, survivors’ trajectories are reset and they may survive for long periods.
What is an advance directive?
Advance directives (ADs) are legal documents that allow patients to record their wishes for future healthcare, including end-of-life (EOL) care. AD may result from ACP but are not necessarily the goal of the process. Although associated with decreased healthcare costs, decreased in-hospital deaths, and increased use of hospice, ADs are often not completed. 62,63 In the ESRD population, AD completion rates are lower than in other chronic illnesses. 63 A detailed evaluation of the contents of AD among 808 patients treated with chronic HD (mean age of 68.6 years old; men = 61.2%) found that 49% had ADs, of which 10.6% mentioned dialysis and only 3% specifically addressed dialysis management at EOL. 64 Small studies in the dialysis population indicate completion of AD may improve surrogate bereavement and increase hospice utilization. 65,66 At the minimum, the designation of a healthcare surrogate or proxy and do-not-resuscitate preferences should be documented as AD in accordance with guidelines. 50
What is entry reentry death?
Entry-reentry deaths are used to describe persons whose illness trajectory is slower but they have periods of hospitalization and periods of better health. Glaser and Strauss were the first to begin to identify and describe these trajectories of how people die.
Why is it important for nurses to understand the trajectory of a patient?
In addition, it is important to understand the common experiences of people living with these various trajectories and the experiences of the family members who care for them . Nurses who care for patients at the end of life should have a basic understanding of the concerns common to people with certain types of illnesses. This will help the nurse better prepare for the care needs of these patients and their families.
What is the trajectory of dementia?
This trajectory is characterized by a slow decline towards death with low functional ability through the majority of their illness. These patients often live with progressive disability and require maximum assistance and care for a long period of time before their death. Patients with a general frailty and decline of all systems, such as with older adults afflicted with multiple conditions, can be categorized with this pattern. Patients diagnosed with dementia or Alzheimer’s disease also have a prolonged period of decline and low level of functioning. Patients with this type of trajectory often die from complications associated with being totally dependent in all activities of daily living. They have also been found to have higher rates of pressure ulcers and pneumonia from being bedbound and with prolonged use of feeding tubes (Rhodes, 2014).
Why is it important to educate patients and families about illness progression?
Educating patients and families is very important because these patients usually have a higher risk of sudden death (particularly with a cardiac diagnosis). These patients are also used to going to the hospital to get “fixed up” for exacerbations. Since this illness trajectory has a less predictable course than other trajectories, we never know if the next exacerbation could be the last. Assessing whether patients have an advance directive is very important because of the unpredictability of this type of trajectory. Since prognosis is not commonly talked about with these types of illnesses, patients might not be aware of their options and perhaps have not considered making an advance directive. Additionally, the risk of death following an exacerbation is great for this type of trajectory and often, as mentioned before, unexpected. Families may have a difficult time understanding why their loved one did not bounce back this time. It is important to educate patients and families about illness progression with this type of trajectory in a way that informs them but does not completely rob them of hope.
How long does cancer last before death?
Patients with this type of trajectory usually have some type of cancer. Their decline is typically short, often only a few weeks or days before they die. As you can see in Figure 2.1, the patient remains at a high level of function until that sudden sharp decline before death. One of the most important pieces of information that a nurse can give patients and families with this type of trajectory is that the end of life often comes quickly, without much warning. Most patients who are living with cancer receive treatment and diagnostic testing, followed sometimes by a break and then more treatment, and the cycle continues until the cancer goes into remission. If the cancer is at an advanced stage, there may be no break in treatment. Patients with end-stage cancer will usually continue their treatments until all curative options are exhausted, their lab values indicate that they are unable to receive further treatment due to low blood counts, or their cancer progresses despite all of the before mentioned interventions. It is often at the point at which the patient is informed that the cancer is spreading, or that there are no other treatment options, that the terminal decline towards death begins to happen. The important factor to explain to patients and families is that a person can be alright one day (or at least holding his own) and then bedbound the next day and actively dying. Thus the period of decline and disability is rapid and often chaotic if patients and families are uninformed that this commonly happens with this type of trajectory. Families of patients with this trajectory often take on the role of caregiver quickly and are usually aware that death is nearing and have the time to make amends and say good-bye. Taking on the caregiver role during this time instead of just being the patient’s spouse or son or daughter can cause emotional distress in family members. Depending on the setting, you can try to offer assistance with basic caregiving tasks, or perhaps institute a nursing assistant or tech to help the patient with those needs. This will help the family member to just be with the patient as the family member rather than as the caregiver.
What does "illness trajectory" mean?
In loose terms, trajectory means “course,” and therefore illness trajectory means “ course of illness.”. By understanding which type of illness trajectory a patient has, it will help to provide answers for two important and common questions many ...
What are the most common diseases that follow this type of progression?
This trajectory is very common among many people in this country who live with a chronic illness which will eventually progress to death. Heart failure and chronic obstructive pulmonary disease are the most common illnesses that follow this type of progression.
What Is a Health Trajectory?
Taken together, a theoretically justified health trajectory that fits the data in a statistical sense provides information about health status at any specified time, including an endpoint of interest. A health trajectory describes the dynamic (changing) course of health and illness. A health trajectory shows the values of an indicator of health status expressed as a function of time. As examples, the trajectory of rectal temperature for the first patient to undergo open-heart surgery under direct visualization is shown in Figure 1 ( Bolman & Black, 2003 ), and trajectories of pain at bedtime over the first postoperative week in a sample of 30 surgical patients who had same-day procedures at a Veterans Administration Medical Center are shown in Figure 2 ( Busch, 2002 ).
Why is time important in health trajectory?
Time is the fundamental predictor variable in health trajectory research because health indicators are plotted and modeled as a function of time. Although apparently straightforward, the nature, conceptualization, and measurement of time are elusive and challenging ( McGrath & Tschan, 2004 ). Clock or calendar time, biological or social time, perceived time, and transcendence (beyond time and meaningfulness in time) are relevant to nursing research and are all potentially important as predictors of health status in health trajectory research ( Henly, Kallas, Klatt, & Swenson, 2003 ). In addition to a relevant longitudinal measurement protocol and a testable statistical model consistent with the scientific problem under study, use of a sensible metric for time ( Singer & Willett, 2003) is foundational to understanding intraindividual change as it is summarized in the individual health trajectory.
What is the pattern of health over time?
The pattern of health over time is called a health trajectory. As suggested in the conceptual framework for the Minnesota Center for Health Trajectory Research ( Wyman & Henly, 2011 ), health over time results from multiple factors operating in nested genetic, biological, behavioral, social, cultural, environmental, political, and economic contexts that change as a person develops. Understanding the course and causes of change in health over time allows anticipation of those at greatest risk for adverse trajectories and events, enhances understanding of factors that influence change in health over time, and permits examination of the effects of interventions on the trajectory, including identification of for whom and at what point in the trajectory interventions are most effective. Thus, knowledge about the course and causes of change in health status over time creates the possibility for control by influencing the trajectory itself. Self-care and the actions of health professionals, including nurses, can be directed at all levels of the nested system to impact health over time as a positive resource for life ( World Health Organization, 1986 ).
What was the temperature of the heart during the first open heart surgery?
The expected overall trajectory was curvilinear: From a normal value at outset, temperature was decreased with refrigerated blankets and maintained at 28°C (82.4°F) throughout the procedure, after which rewarming in a water bath continued until temperature reached 36°C (96.8°F). Photo courtesy of LA ink. Used with permission.
Why is time a predictor variable?
Time is the fundamental predictor variable in health trajectory research because health indicators are plotted and modeled as a function of time. Although apparently straightforward, the nature, conceptualization, and measurement of time are elusive and challenging ( McGrath & Tschan, 2004 ).
What is the core of nursing research?
Explaining variation in health behaviors and illness responses and evaluating the effectiveness of existing and novel health interventions at individual, family, group and population levels are at the core of nursing research. Time and context are essential factors but rarely have been considered explicitly in theory, design, or statistical models used in nursing science.
How does nursing science contribute to the overall effort to improve health?
The contribution of nursing science to the overall effort to improve health will be enhanced when change over time is explicit in nursing theory, longitudinal designs are used, and contemporary statistical approaches for modeling change in health status are incorporated into research plans.
