Hospitals are obsessed with being No. 1. And about the only thing that matters to them even more than that is letting everyone know they are No. 1 via billboards, television and radio ads, the internet, and more. While hospitals are happy to boast that they are helping their patients live a good life, none of them are yet boasting “We’re No. 1 in helping our patients have a good death.” They should be doing just that.
Not long ago, physicians could offer little more than a prayer when a patient died. When a patient’s heart stops today, the hospital staff can employ an array of potentially death-stopping — even death-reversing — interventions such as cardiopulmonary resuscitation, cardiac defibrillation, blood circulation with artificial pumps, and a plethora of medications.
Now that death has effectively turned into dying, a phase of our lives rather than a momentary occurrence, there is increased interest in helping people achieve a “good death.” Many people want to die at home. That preference is at odds with reality — most Americans pass away in health care facilities. Research I published recently with two colleagues showed that only one-third of U.S. residents with heart disease die at home.
Given that many people die in hospitals, it makes sense to rank hospitals on how well they manage patients’ deaths. Two questions lie at the heart of a ranking for end-of-life care: What, exactly, constitutes a good death? And can those elements be quantified?
We think we know what constitutes good medical care, and that is reflected in the quality measures we use to reward and penalize hospitals. Good medical care is affordable, accessible, safe, and appropriate, each of which can be quantified by well-developed metrics. These have gained traction for assessing general medical care. Quality improvement at the end of life has attracted less attention.
Few researchers have tried to enumerate the components of a good death. One who has is Dr. Arif Kamal, an oncologist and palliative care physician at Duke University. He has worked with national organizations to define quality metrics for end-of-life care. Many people associate a good death with natural death, another ill-defined concept. The dearth of information on end-of-life care means that even as we are getting better at figuring out how good hospitals are at helping their patients stay alive and live, we have no way of knowing how good they are at helping their patients when they are dying.
To find some answers about where to start in creating a such a death ranking — I’ll call it Top Hospitals for End-of-Life Care — I turned to Dr. Susan Block, a professor of psychiatry and medicine at Harvard Medical School and co-director of the school’s Center for Palliative Care. She told me that as far as death and dying are concerned, physicians and patients may not be on the same page. “Patients aren’t thinking about things like whether they should get CPR or not,” she said. “They are thinking of personal values.”
One challenge with assembling data about the subjective experience around death and dying is that it is rarely collected. Currently, patient satisfaction surveys are completed only by those who are alive. For the most part, when a patient dies, his or her loved ones aren’t routinely approached to provide feedback about what the end was like and what the hospital could have done better. One exception is the VA Health System, which asks bereaved family members to complete a survey about the care the veteran received in the hospital during his or her last few months of life.
Several commonsense aspects of end-of-life care could be part of Top Hospitals for End-of-Life Care. “The proportion of patients at a hospital who have a health care proxy documented is a good quality metric,” said Block.
According to Ben Harder, who is chiefly responsible for putting together U.S. News and World Report’s ubiquitous Best Hospitals ranking, other metrics that could be included are “excessive use of heroic measures and appropriate use of hospice and palliative care.”
Here’s another, from Dr. Thomas Lee, chief medical officer at Press Ganey Associates, an organization that helps health care organizations assess patient experience. He said that doctors “are supposed to be giving people peace of mind, and the likelihood to recommend a doctor or a hospital reflects that peace of mind.”
Those provide a decent start for assembling a list of death-quality indicators. There are challenges to developing other robust ones. A good quality metric is both easy to measure and modifiable through specific actions taken by the hospital. Dying at home would be a good metric because it meets both of those requirements. All by itself, however, it isn’t an ideal metric. Some people prefer to die in the hospital for cultural and medical reasons. For other people, dying at home may indicate a lack of access to health or hospital care. Many patients simply cannot be cared for or even kept comfortable at home. Lastly, dying at home represents just a snapshot, because even among patients who are able to die at home, many are discharged from the hospital just days before their demise.
I can imagine a death-ranking list that includes these criteria:
- percentage of patients with a documented health care proxy
- percentage of patients who receive heroic measures like cardiopulmonary resuscitation or cardiac defibrillation
- appropriate use of hospice and palliative care
- the likelihood of a family recommending the hospital for end-of-life care
- whether patients’ location of death was concordant with the place in which they had wanted to die
- availability of around-the-clock spiritual resources
- the training the medical team receives for dealing with the medical and psychosocial issues that arise when death is imminent
The last item is a tough one. Research I did with several colleagues during my residency showed that most physicians are uncomfortable discussing important things like prognosis, palliative care, and death with their patients, particularly those with heart failure. We train nursing students to be meticulous at placing IVs and medical students at physical exams, but no standardized training requirement exists when it comes to end-of-life care.
Instead of a separate death ranking, aspects of appropriate end-of-life care could be incorporated into existing rankings. “Patients typically choose a hospital for a particular clinical need — cancer care, heart care, orthopedic care — as opposed to choosing it for end-of-life care per se,” said Harder. “I’d be more inclined to incorporate it as a measure that crosscuts multiple specialties, much as we do now for patient safety and patient experience measures. … If any patient’s condition takes a turn toward the inevitable, then the hospital’s ability to provide good end-of-life care may become very important to patients.”
The most important reason for quantifying and then publicly reporting how hospitals deliver end-of-life care is simple: Hospitals pay attention to things that can make them look good or for which they can be financially rewarded or penalized. Take the case of rehospitalization. For many years, hospitals didn’t care much if patients who were discharged ended up a short time later back in the hospital. Ever since Medicare announced a penalty for high 30-day readmission rates, hospitals have worked hard to prevent rehospitalization.
The transparent availability of end-of-life data might actually go a step further and improve physicians’ behavior as it relates to patient care at the end of life. Hospitals have few incentives to deliver high quality care to patients when they are dying and face little scrutiny. That has to change.
Haider Warraich, M.D., is a fellow in cardiology at Duke University Medical Center and the Duke Clinical Research Institute, and author of “Modern Death: How Medicine Changed the End of Life” (St. Martin’s Press).
My dad 68 was forced discharged from Montefiore in New Rochelle because I kept complaining about his care. When I went to the Executive Director Anthony Alfano after getting the run around from Customer Relations Department he held a meeting with doctors instead of speaking to me and had him discharged. (DOH cited 4 deficiencies for the care my dad received). He had an emergency surgery for a tear in his sigmoid colon. He was on dialysis for 2 years doing well until he was sent home in such poor condition and was taken back to their ER 3 days later to suffer from a PE. The ER doctor delayed treatment, not following through on a critically ill patient (his words written in intake) ordering all STAT workup including an abnormal EKG with no on call Cardiologist in over 2 hours, and admitted during the investigation that he was worried about his D-Dimer numbers. It is so sad my dad had to die like this with so many other options. He never should have been released from that hospital considering the Resident and I had a meeting the evening before about what the next few days plans were on getting my dad moving and breathing better (having large areas of plural effusions causing breathing issues). He had both Medicare and Medicaid. I tried to report the errors to CMS, but get the run around there as well. The hospital was not penalized for what they did, lying on billing about admitting reasons, and many other things. Impossible to find a lawyer to serve justice for what they did due to the fact that he has renal problems and would cost too much to peruse a case. So what am I left with, nothing. My life has been changed, my family lie has suffered and I have become depressed after what I had to witness and deal with. Nobody to help me, nobody to let the truth out. They all cover it all up lie after lie. They have even lied on his medical records. It is the absolute worst thing I have ever had to deal with in my life.
EVALUATING END-OF-LIFE CARE
Some additional questions to ask
about a death that has already happened:
When did the various people concerned
know that this patient was dying?
The doctor, nurses, patient, family.
How long did dying take?
Was this too long or too short?
Did the patient suffer at the end of life?
Did legal worries distort the terminal care?
Does the hospital have written policies
concerning the following medical methods of managing dying:
(1) How much pain-medication can be given?
(2) Is terminal sedation permitted?
(3) How should curative treatments and life-supports be stopped?
(4) Can water and food ever be withheld or withdrawn?
Was this patient ‘treated-to-death’?
Were maximum medical system all still operating
when the patient died?
If this hospital operates in a right-to-die state,
does it cooperate with the right-to-die law?
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