The definition of end of life is so much more clinical than the actual event. The final period in a person's life in which it is medically obvious death is imminent or a terminal, moribund state cannot be prevented, is how end-of-life (EOL) is defined.1
During the last 2 months of patients' lives, Medicare paid $50 billion in 2008 just for doctor and hospital bills. That's more than the budget of the Department of Homeland Security or the Department of Education. Furthermore, approximately 20-30 percent of these medical expenditures may have had no meaningful impact.2
Extending the quantity of the patient's life does not, however, always increase the quality of the patient's life. "Quality EOL care is something that too few patients and families in our country receive," said Kristi Griffith, BSN, RN, CHPN, manager, palliative care, Methodist Charlton Medical Center, Dallas, TX.
According to Griffith, Medicare estimates approximately 25 percent of total spending occurs in the last few months of life. "Unfortunately, those aggressive and costly treatments oftentimes don't really extend life or necessarily improve the overall quality of life for the patient or family," she said.
Where to die and how to pay for it is a complex issue as reflected in the high costs of Medicare. Deciding whether to extend life through medical technology and/or die in a healthcare facility versus a home environment is as complex as figuring out how to pay for the high costs of dying.
"The vast majority of people will state they want to remain independent and forego aggressive treatments or 'heroic measures' if their quality of life will not be improved," said Griffith. "And yet, approximately 75 percent of patients die in a healthcare facility - either a nursing home or a hospital instead of where they prefer to die, which is in a home environment."
Sharing Final Wishes as a Gift
According to Griffith, there are many advantages for patients and families alike when referred for hospice or palliative care (H/PC), which includes: expert symptom management, education regarding the disease process and clinical manifestations, advance care planning, emotional and spiritual support, and deliberate and thorough communication.
"And yet 2008 studies show approximately 62 percent of patients and families who experienced death did not receive the many benefits of hospice care," she added.
Griffith said she expects that the historic patterns regarding EOL care will continue into the future. In the meantime, she stresses the importance for family members to communicate their final wishes to one another.
"Without say, one of the best gifts one can give their family is the completion of an advance directive," she said. "Advance directives are a formal documentation of one's wishes for healthcare and treatment only to be implemented when they are incapacitated and are no longer able to self-determine."
Improving EOL Through Education
Jay Westbrook, MS, RN, CHPN, clinical director, Compassionate Journey, Lake Balboa, CA, started an EOL clinical, education and consulting service in 2001. According to Westbrook, there are several key factors driving the emerging trends in H/PC.
"The first of these is the legitimization and visibility of H/PC created by the proliferation of training programs, as well as the relatively recent ability of both nurses and physicians to become board certified in H/PC," Westbrook explained.
As the number of certified practitioners has increased through the growth of educational programs, Westbrook said demonstrable improvements in hospice care have also increased.
"We have witnessed an explosion in the number of palliative care programs in hospitals, community settings and even prisons," said Westbrook, who works to improve elder and EOL care in the corrections community, and also conducts support groups, lectures and workshops locally and nationally on EOL care and grief recovery.
Baby Boomers Driving the Trends
In addition to increased training programs, the Baby Boomer generation - the "graying of our society" - is also emerging as a driving force in the growth of H/PC, said Westbrook. Baby boomers have changed the developmental stages through which they have passed, he added.
"Their aging and dying will look very different from that of other generations," he said. "They are old enough to have watched - or to be watching - the death of their parents in ICUs and nursing homes, and to know that is not how they want to die."
Baby boomers typically question authority, are technology-competent, informed health consumers, somewhat vain and controlling, and certainly not afraid of medications, added Westbrook. "These qualities create the 'perfect storm' situation for them to choose H/PC over prolonged futile care," he said.
A 'Gentler, More Tender Death'
Westbrook believes more and more baby boomers will prefer "a gentler and more tender death" at home with family and friends as opposed to the previous generation's quantity of life extended by medical technology in ICU or nursing homes.
"As H/PC becomes more broadly known, available, and accessible, I believe its own benefits and goodness will create a momentum of attraction," said Westbrook who summarized the following example of quality EOL:
"The idea of a patient with a terminal condition who wants to die at home, with their pain and other symptoms controlled, surrounded by friends and family, is a gentler, more tender death. Being treated as a whole person rather than a body part or disease, ('the cancer in room 7' or 'the lung in room 8'), while family and friends are supportive, both emotionally and spiritually, will be highly attractive to many of the 'baby boomer' generation, and certainly preferable to the traditional 'quantity of life over quality of life' with respect to the ICU/nursing home deaths of their older family members."
Physical, Financial, Functional Realties
But Westbrook also explained choosing quality over quantity isn't that simple.
"It's not simply a matter of choice," said Westbrook. "There are two primary factors driving the fact that today many people die in a setting (institutional) that is different than their expressed preference (home) for the site of their death."
First, Westbrook explained, many of those dying today are of a generation that might be described as "obedient patients."
"That is, they do whatever the physician suggests or orders without question and without expressing their opinion or desire, he said. "They do not want to bother the busy doctor, and they believe the doctor knows what is best for them. However, I believe this will change as the 'Baby Boomers' age into dying."
Second, said Westbrook, many of those who are dying are unable to function independently, and lack either capable informal caregivers at home and/or the finances to pay for non-medical caregivers at home.
"While the non-medical caregivers are a very rapidly growing segment of the healthcare industry, their services are not paid for by either Medicare or Medicaid/MediCal," he said. "They must be paid for either out-of-pocket or by long-term care insurance.
An informal caregiver may be in the home; however, s/he may not be able to meet the physical challenges presented by caregiving, such as a 92 and 93 year old couple where he is bed-bound, and his wife has congestive heart failure.
"The choice may be to die at home, but physical, functional, and financial realities may conspire to place him in a nursing home," he said.
Doing More With Less
In addition to the high costs associated with EOL, the hospice industry is gearing up for another major battle that could potentially impact patient care.
"These are challenging times for the hospice industry," said Nanette Minton, RN, CHCE, CHPN, CHPC, hospice education consultant, Foundation Management Services, Inc., Denton, TX. "As is the case in healthcare across the country, we are doing more with less."
Foundation Management Services provides continuing education for nurses, social workers and administrators in regulatory compliance and technological advancement. According to Minton, the organization's primary objective is to assist healthcare providers develop, manage and promote fiscal integrity and quality patient care.
"While we have not had to endure the large cuts in reimbursement that the home healthcare industry has, the hospice industry is now facing a change in payment system which will affect the way we are able to take care of patients," said Minton.
Future Changes in Medicare Payment System
According to Minton, the 2010 "Report to Congress: Medicare Payment Policy" recommends changing the Medicare payment system for hospice to have relatively higher payments per day at the beginning of the episode and relatively lower payments per day as the length of the episode increases.
The recommendation changes also include a relatively higher payment for the costs associated with patient death at the end of the episode with implementation of the payment system changes in 2013.3
"This change will penalize hospice for patients who are on service for a longer than expected period of time, thus multiplying and increasing the potential issue of hospice patients being referred too late," explained Minton.
Combined with the possibility of late referrals, future Medicare costs are predicted to double. Medicare will spend more than $110 billion for the terminally ill this year; more than half of that amount will be spent on hospitals and associated costs, but Medicare's actual EOL outlays may be as high as $150 billion, with EOL costs reaching at least $300 billion by 2020.4
The issues are complex, but the advice is simple, said Minton. "I say, hold on for the ride, because it's going to get bumpy."
1. McGraw-Hill. (2002). Definition for end of life. McGraw-Hill concise dictionary of modern medicine. New York: McGraw-Hill Professional.
2. The Cost of Dying. (2009, Nov.19). 60 Minutes. CBS News.
3. Medicare Payment Advisory Commission (MedPAC). (2010) Report to Congress: Medicare payment policy. Retrieved July 8, 2010, from the World Wide Web: www.medpac.gov.
4. Dartmouth Institute for Health Policy and Clinical Practice. (2008). Study of chronic illness in America. Retrieved July 8, 2010, from the World Wide Web: http://tdi.dartmouth.edu/centers/health-policy-research
Amy McGuire is a frequent contributor to ADVANCE.