Please note: This is one of the most depressing subjects on which I'll write. It is an important topic that gets overlooked in our current healthcare system. This is not intended to be a full-length discussion on the benefits and risks associated with end-of-life care but rather serve as an introductory piece.
Leading health care providers came together near the end of May to change how medical professionals handle end-of-life issues affecting their patients. The coalition of health care providers included Kaiser Permanente, L.A. County USC-Medical Center, UCLA Health System, and Cedars-Sinai, among others. KPCC reports that the guidelines call for doctors and medical centers to encourage all patients to engage in advance care planning, and make this approach so standard so providers can deliver appropriate that reflects each patient's values and preferences; facilitate timely access to palliative care and other support services such as hospice care for patients with progressive and chronic illnesses; advise patients about the potential benefits and drawbacks of medical treatments, and whether such care can deprive individuals of a peaceful death; and engage in "shared-decision making with patients to reach conclusions about what constitutes optimal care in particular institutions. Dr. James Leo, medical director of best practice and clinical outcomes at Memorial Health Care System told KPCC that 80% of people in California say they would like to have a conversation with their physician about advance care planning but only 7% have. An earlier version of the Affordable Care Act (ACA) provided funding for these types of conversations but was later taken out of the law.
Thanks to medical technology and the work of doctors and other medical professionals, the elderly and chronically ill are living much longer than they would have just a few years or generations previously. Daniel Callahan, the founder of the Hastings Center, the first bio-ethics think tank argued that the United States is unique in its emphasis on medical technology and advances. Citing public opinion polls showing that Americans place a greater faith in these life-extending technologies, Callahan explains that many Americans are talked into one more surgery, one more procedure, to try to extend their life. Because of technological advances, some patients are able to live longer lives and have their quality of life improve. It is next to impossible to predict which patients will improve dramatically. Some family members of patients increase pressure on physicians to make drastic attempts to keep their loved ones alive. This occurs, even if it is against the will of the patient. When these types of situations arise, doctors, such as Dr. Jack Kevorkian appear. Dr. Kevorkian tried to explain his work in euthanasia and physician assisted suicide by pointing out that he played a valuable role to people who felt that they could not go on and wanted to die with dignity. In one explanation, Dr. Kevorkian, opined that we're all terminal and should focus on the dignity of the patient to limit suffering. Physicians and bio-ethicists often have to face tough decisions to decide whether to help a patient continue to live even with suffering or to allow them to die with some sort of control. Physicians are taught to heal the physical ailments of every patient; unfortunately, not all patients can be healed. Physicians spend everyday battling death, it is often difficult for them to simply admit defeat and work to manage the symptoms. No matter what, the patients face the difficult task of preparing for an uncertain future and certain death.
Funding for conversations about end-of-life care was the impetus for the "death panels" debate that circulated around the ACA and continues to do so. Well, that and the fact that it was easy to make stuff up about the ACA. Not surprisingly, this debate constructed of false premises did nothing to advance the conversation in end-of-life care. One of the more common end-of-life care options is hospice care. Hospice care is available to all patients with any terminal illness regardless of race, sex, religion, age, or income (in some places). Hospice care focuses on caring for the patient rather than curing the illness. Ideally, hospice care provides medical care, pain management, emotional and spiritual support intended to help the patient cope with the terminal illness. The hospice team attempts to come up with a patient centered plan focusing on pain management and controlling the symptoms. Because it does not focus on curing the disease, there are many critics of hospice care who claim that hospice is killing off the elderly or terminally ill, as well as claims of abuse. In 2012, 1.5 to 1.6 million people received hospice care with a median length of time in hospice care of about 19 days. This is due in part because patients are not being referred to hospice care in a timely fashion, as well as the severity of the diseases that the patients have when they are referred. While patients can receive hospice care in the home, hospital, or retirement home facility, over 40% of hospice patiens receive care in their private residence. Over 80% of hospice care patients are over the age of 65. Over one-third of hospice care patients have a terminal cancer diagnosis. Hospice care does not buy into the Kevorkian argument that we are all terminal.
Daniel Callahan concluded that our American view on end of life procedures is ultimately an unwinnable fight. He said,"we have a culture that has bought into the idea that medicine is supposed to save your life. But no matter how (many) medical treatments we get, it is never good enough, because people eventually die. You can save them from one thing, but then death gets them one way or another. We're not in a winnable war against death." It's, perhaps, with those words in mind that there have been bills brought before Congress in an effort to direct patients to have voluntary conversations with their physicians under Medicare and Medicaid and to provide additional education on various end-of-life treatments, as well as research into palliative care. The first is the Personalize Your Care Act (H.R. 1173) introduced by Representative Earl Blumenauer (OR-3) and has 57 co-sponsors. This act focuses on covering advance care planning under Medicare and Medicaid and establishing grants to create and expand programs for life-sustaining procedures. The other is the Patient Centered Quality Care for Life Act (H.R. 1666) to research end-of-life treatment centers and to establish educational programs to educate physicians and patients on life-sustaining procedures. This act was introduced by Representative Emanuel Cleaver II (MO-5) and has 98 co-sponsors. GovTrack does not give either of these bills a chance of passing or becoming law. The death panel debate largely is the reason why there is not a chance for these bills to pass.
The National Institute of Health (NIH) found in a study that when elderly heart-failure patients received specialized care (read: hospice care), the patients had a higher quality of life and a reduction of hospital admissions. Additionally, this care resulted in a savings of 38% in Medicare costs. It is this savings in Medicare, Medicaid, and healthcare spending that will be the determining factor in whether life-sustaining policies, including hospice care and palliative care is recommended to be law. A La-Crosse, Wisconsin based hospital, Gundersen Lutheran Health System has an advanced care planning system that has become an internationally accepted model. By integrating planning throughout the healthcare system, it procues the care that terminally ill patients want while reducing hospital admissions, length of hospital stay, and average reimbursement per deceased patient. A 2007 study by Dartmouth found that the average reimbursement per patient was nearly $7,000 less than the U.S. hospital average. Additionally, the average hospital days per deceased patient in the last two years of life was 13.5 days, nearly half of the United States Average of 23.5 days. A 2006 study by Duke University found that the average savings per Medicaid patient was $2,300. A hospital in Indianapolis found an average savings of $5,000 per hospitalized patient and $1,500 per discharged patient.
The Obama administration likes to talk about how the ACA bent the cost curve for healthcare in the United States. Many liberal pundits like to say that we do not have a debt problem in this country, we have a medical spending problem. Advanced planning for terminally ill patients allows the patient to die with dignity, allows them to choose how they die, provides less stress to the family of the patient, and reduces the healthcare spending in the United States dramatically. While Dr. Kevorkian may have had his own twisted view on the world, he is certainly right that we're all terminal. We need to address this fact and begin working on a strategy that allows for a dignified death to those who wish it. Difficult conversations with physicians and patients, unfortunately, have to occur, because we will all die. It's a depressing thought, to be sure, but it is not one that goes away, simply by ignoring it.