Source: Patterns of Functional Decline at the End of Life
Table of Contents
Have you ever wondered how different illnesses affect our lives and deaths? How do we cope with the uncertainty and unpredictability of our health? How do we plan for our future and make the best decisions for ourselves and our loved ones?
These are some of the questions a research paper by Joanne Lynn and colleagues tried to answer. The paper, published in the Journal of the JAMA in May 2003, examined the four common types of illness trajectories that most people experience before they die. These trajectories are:
Sudden death: an unexpected and abrupt cessation of life, usually due to a cardiac or neurological event
Cancer death: a progressive and incurable decline of health due to malignant tumors
Death from organ failure: a gradual and unpredictable deterioration of health due to chronic diseases affecting vital organs
Frailty: a complex and multidimensional syndrome of increased vulnerability and reduced resilience to stressors
The paper analyzed these trajectories’ characteristics, prevalence, and outcomes and their implications for health care and social support. It also proposed some strategies and recommendations for improving the quality of life and care for people with different trajectories.
The main findings of the paper were:
The four trajectories accounted for about 90% of all deaths in the United States in 2018
The trajectories differed significantly in duration, predictability, functional decline, symptom burden, and care needs.
The trajectories also impacted life and death’s psychological, social, and spiritual aspects.
The trajectories required different approaches and interventions to optimize individuals’ and their families’ well-being and dignity.
The trajectories posed challenges and opportunities for the healthcare system and society to provide appropriate and compassionate care and support.
In this article, we will summarize and discuss the main points and findings of the paper and explore how they relate to our lives and deaths. We will also provide practical and actionable suggestions for coping with and planning for your and your loved ones’ trajectories. We aim to help you understand the different illness trajectories, how they affect our lives and deaths, and how we can prepare for them.
Sudden Death
Sudden death is a term that describes the sudden and unexpected loss of life due to a problem in the heart or the brain. It can happen to anyone, even those who seem healthy and have no known medical conditions. Sudden death can be caused by various factors, such as:
A heart attack occurs when a blood clot blocks blood flow to the heart muscle.
A cardiac arrest occurs when the heart stops beating due to an abnormal heart rhythm or a malfunction in the heart’s electrical system.
A stroke occurs when a blood vessel in the brain bursts or is blocked by a clot, cutting off the supply of oxygen and nutrients to the brain cells.
A brain aneurysm occurs when a weak spot in a blood vessel in the brain bulges and ruptures, causing bleeding in the brain.
A pulmonary embolism occurs when a blood clot travels from the legs or other body parts to the lungs, blocking blood flow and oxygen.
Sudden death is a serious public health issue that affects millions of people worldwide. According to the World Health Organization, about 17.9 million people die each year from cardiovascular diseases, which are the leading cause of sudden death. In the United States, about 325,000 people die each year from sudden cardiac death, which accounts for about half of all heart disease deaths. Sudden death can also occur in young people, especially athletes. Some estimates suggest that about 1 in 50,000 to 1 in 80,000 young athletes die of sudden cardiac death each year.
Sudden death can be prevented or reduced by identifying and managing the risk factors that can trigger or worsen the underlying conditions. Some of these risk factors include:
Smoking damages the blood vessels and increases the risk of blood clots and heart attacks.
High blood pressure puts extra strain on the heart and the blood vessels and can lead to heart failure, stroke, or aneurysm.
High cholesterol causes fatty deposits to build up in the arteries, narrowing them and reducing the blood flow to the heart and the brain.
Obesity increases the workload of the heart and the risk of diabetes, which can damage the nerves and blood vessels.
Diabetes, which affects the ability of the body to use sugar as a source of energy, can cause damage to the heart, the kidneys, the eyes, and the nerves.
An inactive lifestyle reduces physical fitness and strength of the heart and muscles and can lead to obesity, high blood pressure, and high cholesterol.
A family history of sudden death or heart disease may indicate a genetic predisposition to certain conditions, such as hypertrophic cardiomyopathy, long QT syndrome, or Brugada syndrome, which can cause sudden cardiac arrest.
Some of the prevention strategies that can help lower the risk of sudden death include:
Eating a healthy diet low in saturated fat, salt, and sugar and high in fruits, vegetables, whole grains, and lean proteins.
Getting regular checkups and screenings for heart disease, blood pressure, cholesterol, and diabetes, and following the treatment recommendations of the health care provider.
Quitting smoking or avoiding exposure to secondhand smoke can improve the health of the heart and the lungs.
Maintaining a healthy weight and body mass index (BMI) can reduce the stress on the heart and the blood vessels.
Exercising regularly, at least 150 minutes per week, and engaging in moderate-intensity aerobic activity, such as brisk walking, cycling, or swimming, can improve cardiovascular fitness and blood circulation.
Limiting alcohol intake can affect the heart rhythm and blood pressure and increase the risk of stroke and heart failure.
Managing stress can trigger or worsen the symptoms of heart disease and can lead to unhealthy behaviors, such as smoking, drinking, or overeating.
Learning CPR and how to use an automated external defibrillator (AED) can save the life of someone who suffers a sudden cardiac arrest by restoring the normal heart rhythm and blood flow.
Sudden death can have devastating consequences for individuals, families, and society. It can cause emotional trauma, grief, and loss for the loved ones of the deceased. It can also have economic and social impacts, such as loss of income, productivity, and contribution to the community. Sudden death can also raise legal and ethical issues, such as the need for an autopsy, organ donation, and inheritance. Therefore, it is important to raise awareness and education about the causes, risk factors, and prevention strategies of sudden death and to provide support and resources for the survivors and the bereaved.
Cancer Death
Cancer death is a term that describes the loss of life due to cancer, which is a disease that causes abnormal cells to grow and spread in the body. Cancer cells can form tumors that interfere with the normal functioning of organs and tissues. Cancer death occurs when the cancer becomes too advanced or aggressive to be controlled by any available treatments or when the treatments cause too much harm or side effects to the patient.
Cancer is a leading cause of death worldwide, accounting for nearly 10 million deaths in 2020. The most common types of cancer that cause death are lung, colorectal, breast, prostate, stomach, liver, and pancreatic cancer. The risk of developing and dying from cancer depends on many factors, such as age, sex, race, genetics, lifestyle, and environmental exposure. Some of these factors can be modified or prevented, such as smoking, drinking, obesity, and sun exposure, while others cannot, such as family history and aging.
Cancer treatment options vary depending on the type, stage, and location of the cancer, as well as the patient’s preferences and overall health. Some of the common treatment options include surgery, chemotherapy, radiation therapy, immunotherapy, targeted therapy, and hormone therapy. These treatments aim to remove, shrink, or stop the growth of cancer cells, relieve the symptoms, and improve the patient’s quality of life. However, not all cancers can be cured or controlled by these treatments, and some cancers may become resistant or recur after treatment. In some cases, the benefits of treatment may not outweigh the risks or side effects, and the patient may decide to stop or refuse treatment.
Cancer death can have devastating effects on individuals, families, and society. It can cause physical, emotional, social, and spiritual suffering for the patient and their loved ones. It can also have economic and legal impacts, such as loss of income, productivity, insurance, and the need for advance care planning, wills, and funeral arrangements. It is important to provide support and resources for the patients and their families facing cancer death and to respect their wishes and dignity.
Death from Organ Failure
Death from organ failure is a term that describes the loss of life due to chronic diseases that affect one or more of the vital organs in the body. The vital organs are the ones that are essential for survival, such as the heart, lungs, kidneys, liver, and brain. When these organs are damaged or diseased, they cannot perform their normal functions, and the body’s ability to maintain homeostasis (a stable internal environment) is compromised. Death from organ failure occurs when the organ damage is so severe that it cannot be reversed or treated, and the body’s systems fail.
Death from organ failure is a common cause of death worldwide, especially among older people and people with multiple chronic conditions. According to the Centers for Disease Control and Prevention (CDC), the leading causes of death in the United States in 2021 were heart disease, cancer, COVID-19, unintentional injuries, stroke, chronic lower respiratory diseases, Alzheimer’s disease, diabetes, chronic liver disease and cirrhosis, and kidney disease. All of these conditions can lead to organ failure and death if not diagnosed and appropriately managed.
The risk factors for developing and dying from organ failure vary depending on the type and cause of the organ damage. Some of the common risk factors include:
Age: The risk of organ failure increases as the organs become less efficient and more susceptible to wear and tear, inflammation, and infection.
Genetics: Some people inherit genes predisposing them to certain diseases or conditions that can damage the organs, such as hypertrophic cardiomyopathy, polycystic kidney disease, or hemochromatosis.
Lifestyle: Some behaviors and habits can increase the stress on the organs and contribute to their deterioration, such as smoking, drinking, obesity, physical inactivity, and poor diet.
Environmental exposure: Some external factors, such as toxins, pollutants, drugs, radiation, and infections, can harm the organs and cause them to malfunction.
The management strategies for preventing and treating organ failure depend on the type and severity of the organ damage, the patient’s preferences, and overall health. Some of the common management strategies include:
Medications: Various drugs, such as antibiotics, antivirals, anti-inflammatories, diuretics, anticoagulants, and immunosuppressants, can control the symptoms, slow the progression, or treat the underlying cause of organ damage.
Devices: Some devices, such as pacemakers, defibrillators, ventilators, dialysis machines, and artificial organs, can assist or replace the function of the failing organ.
Surgery: Some surgical procedures can be used to repair, remove, or transplant damaged organs, such as coronary artery bypass grafting, valve replacement, lobectomy, nephrectomy, and organ transplantation.
Palliative care: Palliative care is a type of care that focuses on improving the quality of life and comfort of patients with serious or life-threatening illnesses, such as organ failure. Palliative care can involve pain and symptom management, emotional and spiritual support, advance care planning, and hospice care.
Death from organ failure can have profound impacts on individuals, families, and society. It can cause physical, emotional, social, and spiritual distress for the patients and their loved ones. It can also have economic and legal implications, such as loss of income, productivity, insurance, and the need for advance directives, wills, and funeral arrangements. It is important to provide support and resources for the patients and their families facing organ failure and death and to respect their wishes and dignity.
Frailty
Frailty is a term that describes a condition that affects some older people, making them more vulnerable and less resilient to stressors. Stressors such as illness, injury, infection, or emotional distress can challenge or harm the body or the mind. Frailty is not a normal part of aging but a complex and multidimensional syndrome that involves physical, psychological, and social aspects of health. Frailty can affect a person’s ability to cope with daily activities, recover from illness or injury, and maintain their independence and well-being.
Frailty is a widespread problem among older people, especially those who are very old or have multiple chronic diseases. According to some studies, about 10% of people over 65 have frailty, increasing to 25% and 50% for those over 85. However, the exact prevalence of frailty may vary depending on how it is defined and measured. There are different ways to assess frailty, such as questionnaires, physical tests, or clinical criteria. Some of the common signs and symptoms of frailty include:
Generalized weakness, fatigue, or exhaustion
Slow walking speed, poor balance, or difficulty in moving
Frailty can be caused or worsened by various factors, some of which can be modified or prevented and some of which cannot. Some of the common risk factors for frailty include:
Age: The risk of frailty increases as the body and the mind become less efficient and more susceptible to damage and disease.
Sex: Women are more likely to develop frailty than men, possibly because of hormonal changes, lower muscle mass, and longer life expectancy.
Genetics: Some people may inherit genes that make them more prone to frailty or certain diseases that can lead to frailty, such as osteoporosis, diabetes, or Alzheimer’s disease.
Lifestyle: Some behaviors and habits, such as smoking, drinking, obesity, poor diet, physical inactivity, and lack of sleep, can increase stress on the body and mind and contribute to frailty.
Environmental exposure: Some external factors, such as toxins, pollutants, drugs, radiation, infections, or trauma, can harm the body and mind and cause frailty.
Social factors: Some aspects of the social environment can affect emotional and mental health and cause frailty, such as living alone, having low income, education, or social status, or experiencing abuse, neglect, or discrimination.
Frailty can be prevented, delayed, or reversed by adopting healthy and active lifestyles and receiving appropriate and timely medical and social care. Some of the common intervention approaches for frailty include:
Physical activity: Regular exercise can improve body strength, endurance, balance, mobility, and mind mood, cognition, and confidence. Physical activity, including aerobics, resistance, balance, or flexibility exercises, can be tailored to the individual’s abilities and preferences.
Nutrition: A balanced and nutritious diet can provide the energy, protein, vitamins, minerals, and fluids that the body and mind need to function well and prevent or treat malnutrition, dehydration, or weight loss. Nutrition can be supplemented by oral or enteral products if needed.
Medication: Taking the right medications at the right doses and times can help control the symptoms, slow the progression, or treat the underlying causes of the diseases or conditions that can lead to frailty, such as diabetes, hypertension, heart failure, or depression. Medication can also be reviewed and adjusted to avoid polypharmacy, adverse effects, or interactions.
Devices: The appropriate devices or aids, such as hearing aids, glasses, walkers, canes, or wheelchairs, can help compensate for the impairments or limitations of frailty. Devices such as pacemakers, defibrillators, ventilators, or dialysis machines can also monitor or assist the body’s vital functions.
Surgery: Undergoing the necessary surgical procedures can help repair, remove, or replace the damaged or diseased organs or tissues that can cause frailty, such as coronary artery bypass grafting, valve replacement, cataract surgery, or organ transplantation. Surgery can also be avoided or postponed if the risks or benefits are unfavorable.
Palliative care: Receiving palliative care can help improve the quality of life and comfort of patients with serious or life-threatening illnesses, such as frailty. Palliative care can involve pain and symptom management, emotional and spiritual support, advance care planning, and hospice care.
Frailty can have profound consequences for individuals, families, and society. It can cause physical, emotional, social, and spiritual distress for patients and their loved ones. It can also have economic and legal implications, such as loss of income, productivity, insurance, independence, and the need for advance directives, wills, and funeral arrangements. It is important to provide support and resources for patients and their families facing frailty and to respect their wishes and dignity.
Conclusion
The research paper by Joanne Lynn and colleagues provides valuable insights into the different types of illness trajectories that most people experience before they die. The paper’s analysis of sudden death, cancer death, death from organ failure, and frailty sheds light on the characteristics, prevalence, and outcomes of these trajectories, as well as their implications for health care and social support. The paper’s main findings underscore the need for different approaches and interventions to optimize the well-being and dignity of individuals and their families and the challenges and opportunities these trajectories present for the healthcare system and society. The implications of this research are profound, as it highlights the diverse impacts of these illness trajectories on the psychological, social, and spiritual aspects of life and death. It also emphasizes the importance of tailored care and supports to address the unique needs of individuals facing these trajectories. As a hospice registered nurse case manager, it is crucial to recognize and understand these trajectories to provide compassionate and person-centered care to terminally ill patients and their families. In conclusion, this research paper is valuable for healthcare professionals, caregivers, and individuals facing these illness trajectories. It underscores the significance of proactive planning, support, and education to navigate the complexities of these trajectories and ensure the best possible quality of life for patients and their loved ones. By acknowledging and addressing the distinct challenges posed by each trajectory, we can work towards enhancing the end-of-life journey for individuals and families, aligning with the principles of empathy and compassion that are fundamental to hospice care.
