"What is certain is that palliative care must be integrated into the overall care of all end-stage organ diseases, if we want our patients and families to receive the best care possible throughout the spectrum of their illnesses." --Solomon Liao, MD and Robert Arnold, MD
Millions of people at any given time are living within the last year of their life and can greatly benefit from palliative care. In 1983 the "President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research" was released. The landmark 3-year study's report has a lot of interesting and pertinent remarks within it. For instance, the investigators' noted that "Perhaps 80% of the deaths in the United States now occur in hospitals and long-term care institutions, such as nursing homes. The change in where very ill patients are treated permits health care professionals to marshal the instruments of scientific medicine more effectively. But people who are dying may well find such a setting alienating and unsupportive." [It was actually not too long ago when people used to primarily die at home, amongst family members--not strangers. People also used to die more naturally, without being connected to multiple artificial life-sustaining measures.] The Commission further summarized their findings that "With the process of dying prolonged and increasingly institutionalized, new concerns have arisen from and on behalf of dying patients. As in all areas of medicine, care of these patients is shaped by the varying degrees of uncertainty regarding diagnosis and prognosis. On the one hand, for most patients death is not unanticipated. One study, for example, found that half the population dies of an illness diagnosed at least 29 months earlier; chronic conditions were the cause of 87% of all deaths in 1978." The Commission also provided some details about the number of facilities and beds and how people die by stating that "There are over 7000 acute care hospitals in the United States with a total of 1.3 million beds. Each year about one in every eight Americans spends some time as a hospital patient; it is estimated that 60-70% of the two million Americans who died in 1981 did so in a hospital. In hospitals, a strong commitment to preserving life is combined with readily available means to try to do so. For a patient to decline procedures needed to make a definitive diagnosis, to reject vigorous treatment that might possibly bring longer life, or to find meaning in death and suffering is not only seen by most hospital personnel as aberrant or even suspect behavior, but may actually be very disruptive of the usual institutional routines and assumptions."
A recent prospective study by a group of doctors titled "Health care costs in the last week of life: Associations with end-of-life conversations" [Arch Int Med. 2009 Mar 9;169(5):480-8. PubMed] found that "Health care expenditures in the United States exceeded $2 trillion in 2006 and are expected to rise rapidly during the next decade. A disproportionate share is spent at the end of life (EOL). Thirty percent of Medicare expenditures are attributable to 5% of beneficiaries who die each year; about one-third of the expenditures in the last year of life is spent in the last month. Previous investigations have found that most of these costs result from life-sustaining care (eg, mechanical ventilator use and resuscitation), with acute care in the final 30 days of life accounting for 78% of costs incurred in the final year of life." They also noted that "Our findings demonstrate that patients with advanced cancer who reported EOL conversations with physicians had lower medical costs in their final week of life compared with those who did not, which is largely a function of their more limited use of intensive interventions. In this study, higher health care costs were unassociated with better outcomes at the EOL. There was no survival difference associated with health care expenditures, and patients whose insured health care costs were higher had worse quality of life in their final week of life. These results also support findings from another CWC study that found that life-sustaining care is associated with worse quality of death at the EOL."
In another recent observational study published by Penrod et al titled "Hospital-based palliative care consultation: Effects on hospital cost" [J Palliat Med. 2010 Jul 19;13(8):1-7. PubMed] it was found that "Palliative care during hospitalizations for advanced disease was associated with significantly lower direct hospital costs, including costs for pharmacy, nursing, laboratory, and radiology compared to costs for usual care patients with advanced disease. Our findings are consistent with a recent multi-center randomized controlled trial (RCT) showing that patients with life-limiting illness randomized to an inpatient palliative care service had fewer ICU admissions on readmissions and lower costs compared to patients randomized to usual hospital care. Our results also fit with a large multi-center observational study by Morrison and colleagues demonstrating significantly lower overall hospital, ICU, and laboratory costs for patients receiving palliative care consultation compared to propensity score matched usual care patients." [The reduction in overall cost for healthcare will be even more substantially reduced when all healthcare workers become certified in palliative care. What are we waiting for?]
The number of deaths in 2007 for the USA that were reported in 2009 by the Center for Disease Control and Prevention. The leading cause of death was heart disease with 632,636 deaths, which accounted for 26% of all deaths. The second leading cause of death was cancer with 559,888, or 23.1% of the total deaths. Stroke was number three with 137,119 (5.7%,), followed by chronic lower respiratory diseases at 124,583 (5.1%), accidents at 121,599 (5%), diabetes at 72,449 (3%), alzheimer's disease at 72,432 (3%), influenza and pneumonia at 56,326 (2.3%), nephritis at 45,344 (1.9%), septicemia at 34,234 (1.4%), suicide at 33,300 (1.4%), chronic liver disease at 27,555 (1.4%), hypertension 23,855 (1%), Parkinson's at 19,566 (0.8%), assault/homicide at 18,573 (0.8%), and all other causes at 447,805 (18.5%).
[Now, by looking at these figures you can see that 12 of the 15 causes of death are medical causes. Stated another way, over 1.8 million of the deaths are medical causes, or approximately 80%. Of all of the medical causes of death, the ones that have a significant number of patients with a life-limiting disease that is equivalent to cancer includes heart disease, end-staged respiratory diseases, end-staged renal disease, advanced dementia (alzheimer's), and end-staged liver disease. And since hospice began in 1976 in the USA, it has primarily been for cancer patients who have less than 6 months to live. In 2006, the National Hospice and Palliative Care Organization (NHPCO) estimated that 36% of all deaths were under the care of a hospice. If we use the same figure of 2.4 million total deaths (same as 2007), then 36% of that number is about 873,000, which is about 49% of all medical deaths. It is also reported that over 50% of all deaths occur within a hospital. Therefore, approximately 800,000 deaths occur within a hospital or other healthcare facility each year. Of these 800,000 deaths, approximate 50% or more (400,000) deaths are caused by people with a life-limiting illness who have a predictable mortality that is similar to cancer, yet most do not receive palliative care.]
According to the World Health Organization (WHO), chronic organ failure conditions are responsible for 47% of the deaths of the world population, while cancer is the cause of death for 13%. --Vinita Mahtani-Chugani
The above statement is from the study article "How to provide care for patients suffering from terminal non-oncological diseases: barriers to a palliative care approach." This is a study conducted by a group of physicians in Spain who interviewed patients, family caregivers and healthcare professionals to evaluate barriers to the provision of palliative care. Like most other developed countries, the authors' noted that "In Spain, some 100,000 people die of cancer every year, while 200,000 die of other long-term life-threatening diseases, such as Heart Failure, Chronic Obstructive Pulmonary Disease (COPD), Renal Failure, Multiple Sclerosis (MS), Amyotrophic-Lateral Sclerosis (ALS), Alzheimer’s, etc." Furthermore, "Studies with patients suffering from non-oncological diseases have shown the impact of those processes on patients’ quality of life to be at least as significant, and sometimes even greater, than the impact associated with cancer."
In a letter to the editor of Critical Care Medicine sent by Dr. Julian Bion and Richard Hall that is titled "Improving the reliability of healthcare systems' responsiveness to the needs of acutely ill patients," [Crit Care Med. 2007 Feb;35(2):637-9. PubMed] it was pointed out that "...in the United States, where each year approximately 6.7 million patients are admitted to intensive care, of whom 540,000 will die; thus, 59% of all hospital deaths and 20% of all deaths countrywide in the United States now occur in intensive care units (ICUs)...These figures do not include the additional numbers of patients who deteriorate while in hospital undergoing elective or emergent treatment."
Chronic critically ill patients provide a very lucrative business for the ever expanding LTAC facility industry and acute care hospitals. As noted in another landmark article titled "Long term acute care hospital utilization after critical illness," [JAMA 2010 Jun 9;303(22):2253-9.PubMed] the authors pointed out that "The number of these hospitals doubled, and critical care hospitalizations ending in longterm acute care transfer and longterm acute care−related costs more than tripled during the 10-year study period." In their opening statement of the article, it was noted that "Approximately10% to 20% of patients recovering from critical illness experience persistent organ failures necessitating complex care for a prolonged period of time." They also pointed out that "One-year mortality was poor, ranging from 48.2% to 52.2% over the study period." [Indeed, these patients have morbidity and mortality that is similar to cancer, as well as living in their last year of life, which is why they should be primarily managed by palliative care--not heroic and costly critical care.]
In 2007 there is an Editorial in the Journal of Palliative Medicine by Solomon Liao, MD and Robert Arnold, MD that is titled "Heart failure and the future of palliative medicine." [J Palliat Med. 2007 Feb;10(1):184. PubMed] In this editorial these two physicians note that "The palliative medicine specialist can expect to see more heart failure patients. This increase is not just the result of the aging demographics and the increasing prevalence of heart failure but is also the result of the evolution of palliative medicine. In fact, palliative care for heart failure provides a model for the integration of palliative medicine into medicine and shows the future of palliative medicine. ...Statistically, heart failure should be one of the most common diagnosis palliative medicine physicians see. Heart disease is the number 1 killer in the United States and is increasing in prevalence; heart failure has a mortality similar to many cancers and patients with heart failure have high symptom burdens. However, historically most heart failure patients die without being seen by a hospice or palliative care program."
Joni I. Berry, PharmD wrote an excellent article titled "Hospice and heart disease: Missed opportunities" [J Pain Palliat Care Pharmacother. 2010 Mar;24(1):23-6. PubMed] that provided some good epidemiological perspective regarding how many people die of heart disease and how many of them receive hospice. . In her article, it was stated " In 2005, the latest year for which full statistics were available at the time of this writing, the federal Centers for Disease Control and Prevention (CDC) reported 2,448,017 deaths from all causes in the United States and the American Heart Association (AHA) an estimated 486,300 deaths from nonacute heart disease. Nonacute heart disease included congestive heart failure, hypertension, and coronary artery disease (excluding sudden deaths). Thus nonacute heart disease accounted for 19.87% of all deaths in the United States that year. In addition, approximately 309,000 people died from acute cardiac causes either in or before they were able to access emergency rooms. This equated to 795,300 deaths from all types of heart disease or 32.49% of all deaths in the United States. If cerebral vascular accidents (CVAs) are included, the total is 35.3% of all deaths. Also in 2005 the National Hospice and Palliative Care Organization (NHPCO) reported that an estimated 797,160 patients died in hospice, and of those 89,282 died from heart disease. This number does not include patients with a terminal diagnosis of CVA. Thus, hospice programs served 32.56% of all people who died in that year and only 3.65% of all people dying from heart disease. Of the 486,300 people dying from nonacute heart disease in 2005, hospice programs cared for only 89,282 or 18.36% of all the people who were eligible for hospice services."
In another article titled "Use of intensive care at the end of life in the United States: An epidemiologic study," [Crit Care Med. 2004 Mar;32(3):638-43. PubMed] there is further perspective regarding how many people die each year in intensive care units. One part of this article stated that "More than one in five decedents in our cohort died after using intensive care some time during a terminal admission. Nationally, this translates to approximately 540,000 Americans each year. To put this figure in perspective, it is similar to the number of Americans who die of cancer annually." Another statement made in the article was "In a country where nine of ten persons polled say they would like to die at home, that 20% will instead die after receiving the most technologically advanced care available is noteworthy." One of their concluding remarks was that "One in five Americans die using intensive care services. Therefore, ICU core competencies should include the provision of quality end-of-life care in addition to life-sustaining care."
- Facts On Dying: Policy relevant data on care at the end of life.