Posted on 02/06/2018 4:33:58 AM PST by spintreebob
There’s no easy way to discuss end-of-life care. And there’s no easy way for patients and families to make decisions related to it. But there are advances in technology that could help providers frame the discussion to help patients and families better understand their situation and gain confidence in the choice they are making.
“I do believe that we’re really at a point that we’re starting to see data analytics and predictive modeling for individuals, especially as we start to look at population health,” says Michael L. Munger, MD, a family physician in Overland Park, Kansas, and president of the American Academy of Family Physicians. “These tools help you not only with your end-of-life discussion, but they are also going to lead to more and better utilization of palliative care services.”
Predictive modeling
Providers sometimes come to a point where they see that there aren’t many options left for a patient to experience clinical improvement or any meaningful quality of life, but with the high level of medical intervention that is possible, some patients’ families find it difficult to accept. Other times, providers may want to continue with interventions at the request of families, without a clear picture of how those actions might actually help patients.
In these cases, predictive analytics may prove useful. It can offer providers risk stratification scores based on a patient’s conditions, medications, hospitalizations, and age. That information can then be shared with families and patients. “To me that’s almost like the next frontier,” Munger says. “It allows everyone to really focus on what they want and what is reasonable. It addresses the question of how do you want to live the rest of your life in the best manner and what’s important to you. Hopefully we can shift the conversation from having to do everything possible to one of having great quality of life.”
Predictive modeling can be used even when end-of-life isn’t imminent. For example, in primary care offices providers can discuss end-of-life care plans with patients using data about their age, comorbidities, functional level, and more. “It’s then a lot easier when you’re sitting down with mom and adult children to say, ‘This is what we see based on all of the previous information and studies together,” Munger says.
These discussions, while difficult, can result in patients living their final years with the best quality of life with fewer hospitalizations, he says. “There is peer-reviewed research that shows that if you have that true advanced care planning earlier, it leads to better care and much higher patient satisfaction. Families no longer feel like they are making the decision to withdraw care,” Munger says. “You have to have these discussions sooner. You can’t wait until it’s time; we have to have it ahead of time.”
Ready for full-fledged use?
Some think predictive analytics tools are too new and untested to take the chance of using at such a sensitive time. “I think we are some distance from the use of data analytics in end-of-life discussions,” says Linda Harrington, RN-BC, PhD, an independent consultant on health informatics and digital strategy; professor at Baylor College of Medicine; past chair of the American Association of Critical-Care Nurses (AACN) Certification Corporation national board of directors; and technology department editor for AACN Advanced Critical Care. “Leading healthcare organizations, grappling with the use of data analytics to solve issues, are confronting challenges largely surrounding data quality, analytic tools, and talent to do the work.”
Today, data analytics alone are insufficient to counsel patients and families about chances of recovery or survival, she says. “End-of-life decisions are very individual and complex, requiring data that may not be currently available or held in one database, such as an electronic health record. In addition to the patient’s medical and psychosocial data, an analysis of data in related research, family history, genetics, resource availability, and more can impact survivability. Data analytics that create a holistic view may one day enable better support for patients and families.”
More than 40,000 studies have been published over the last decade on end-of-life care, and 10,000 on data analytics, according to Teresa Rincon, RN, enterprise critical care champion for the EHR design team at UMassMemorial Health Care. Still, she says, fewer than 100 of these studies have specifically investigated the use of analytics in end-of-life care. While EHRs contain an enormous amount of data, she cautions that this data varies in its completeness and detail. She adds that EHRs are used primarily for clinical and financial functions, and may not contain the data elements and formatting necessary to use in data analytics for the purposes of end-of-life care.
Where data falls short
Rincon says data analytics also lack the ability to take into account the emotional and physical aspects of death and dying. Harrington agrees, adding that it is an interesting time to discuss technology in end-of-life care because she is seeing a growth in narrative medicine in response to the shortcomings of the digital world.
“The focus is on the experience of illness, in this case end of life, the meaning of which can be lost in hard data stores,” Harrington says. “The lesson here is to balance technology and data analytics with the larger picture of the patient and family experience.”
How one processes end-of-life discussions is also influenced by emotional, psycho-social, and spiritual aspects, Rincon says. Although survival rates and statistics may help some in the decision-making process, the same information may create false hope for others. “There are also those that seem to defy statistics, living much longer than predicted. These outliers may cause caregivers, patients, and families to lose trust in predictive models derived from data analytics,” she says.
Data analytics may provide some use in providing individualized care and interventions in end-of-life care, Harrington says, but research is also conducted in controlled environments and doesn’t often take into account the human element. To truly apply data analytics to sensitive end-of-life care discussions and planning, there has to be a full understanding of the source of the data and how it was compiled, and the unique needs of the patient and their family, she says.
These concerns underscore Munger’s advice that end-of-life discussions happen sooner, and with a provider who has a relationship with the patient and family. “This is where having a relationship with a patient and family really pays off because when I take care of a family, I’ve had other challenging conversations that are delicate,” he says. “If you have someone that’s trusted and that you’ve shared things with before, now we can sit down with good data and statistics and have that relationship because I’ve become a trusted voice.”
I post this in Religion because there is only one mention of spiritual in the article. Data Analytics, devoid of religion dominates this article, and the discussion in Healthcare circles.
Of course, we taxpayers pay for most end-of-life activity in the elderly and those with severe disability.
End-of-Life is just one of many areas where we will increasingly hear Well the data and predictive analytics tells us to do X.
First, the Socialist planners came for the inconvenient unborn. Then they came for the expensive elderly. Then they came for me.
For later
I’ve had a doctor in a clinic for the last fifteen years where EPIC seems to guide, more and more, every encounter we have. It “guides” the provider on “best practices,” for example, statin recommendations, desirable blood pressure, and flu shots.
My last trip to the doctor, last month (he insists on seeing me every six months, or I get “scolded”) was somewhat tense. I’ve told him, for years, that I can’t tolerate statins but he keeps asking me to consider them. He tells me he doesn’t believe my BP readings are lower at home, that my new cuff must be inaccurate, and that the readings in the office (always much higher) are the only ones that matter. And that, because of controversial new BP guidelines, he would like to see me on even more medication. Then, off course, he’d like me to get the (near) useless flu shot.
He’s obviously under pressure from the big health system he works for to do what the “guidelines” tell him. And it only seems to have gotten worse over the years. I don’t feel I have the same kind of relationship with him that I’ve had with doctors in the past.
I dread this going forward as I transition into my medicare years. If this article is any indication, the time is rapidly approaching when my “provider” will be saying things like “the recommendations say you have only x years to live at such-and-such quality of life, so we don’t recommend x. Have you considered your end of life plans?”
I’m not looking forward to those “conversations.”
I seem to recall somebody not too long ago referring to this as “death panels”... seems they were also accused of being “tinfoil hat crazy delusional”.
Just about a year ago my mother went into the hospital after she was found lying on the kitchen floor seizing for how long - we didn't know. The first doctor was doing his best to prepare us for the worst. But every thing he told me by phone (I live in FL and she was in PA) didn't make sense that she was at death's door. It turned out the first doc was treating the DNR and not the patient. When we got another physician on the case and he started treating her and now she is living almost independently in an assisted living home and we talk periodically.
So even though my mother's case does not disprove their premise it does prove that population statistics cannot be applied to individuals AND that individuals should still be treated by competent caring staff and not people looking to cut expenses. It is bad enough that we are killing off millions of unborn, now we need to start killing off the elderly when they start to look inconvenient or too costly.
I work in epic every day and do some programming for it. It does guide best practices, you would be amazed at the variation in practice and quality of medical care. However it does not think for the provider and the recommendations can be ignored based on the situation. No computer is a substitute for your brain.....
Please shoot an email to my doc!
Yes the data seems cold when dealing with end of life. But when you think about it, how is that different from the opinion from an experienced physician? When I give an opinion on the chance of meaningful recovery, I am using the data (experience) from treating patients for years to make a prediction in the case at hand. Some families may see it as less biased and less emotional to look at raw statistics...
End of life discussions are difficult but necessary. We spend a lot of time and money literally torturing some people at the end of their lives. Just because we can put someone on a ventilator or artificial support does not mean we should in all instances. Patient and family input are what drives this care and as in any major decision, they should have the best data we have available to them in the form they most easily relate to - whether that is opinions of experienced medical professionals, computer data, or a mixture of both.
On paper I look like I should be dead. I work almost fulltime. I care for my severely autistic grandson. I workout at the gym whenever possible.
I’M sure they would love me to drop dead.
Good for you, and God bless you! Keep proving them wrong.
“End of life discussions are difficult but necessary. We spend a lot of time and money literally torturing some people at the end of their lives. Just because we can put someone on a ventilator or artificial support does not mean we should in all instances.”
That’s a terribly difficult time for caring families. I can’t imagine being an MD and dealing with it on a regular basis. God bless you!
The best way to deal with end of life is based on a simple exercise plan:
Dig a hole in your yard that is deep enough to require you to use your arms to climb out.
Once a day, every day, jump into the hole and climb out.
Eventually, the day will come when you can’t climb out.
When that happens, simply lie down.
The Flu vaccine isn’t worthless. It lessens your chance of getting the flu and lessens the symptoms. Best of all, it is harmless.
Low-dosage statins were problem free for me. The original dose led to leg pain.
It is a privilege to deal with people in a time of crisis often at their worst. My guiding principle is to honor Jesus Christ in all that I do. It is difficult and I shed tears, but it is also rewarding. Thank you for your kind sentiments!
I can’t tolerate even the lowest dose of statins. The pain is really bad.
Good things to read in this context:
“Being Mortal” by Atul Gawande.
“The Median is Not the Message” by Stephen Jay Gould.
BTW, from the moment Obama said he wanted all of American medicine on computer, we have dreaded the day when they would start data dredging and numbers crunching in order to generate yet more government guidelines.
Interesting...docs I and my husband have seen say that a higher than normal blood pressure at their office is normal...because you are at the DOC’S OFFICE!
Yesterday, one of my best friends husband had to make an end of care decision for HER....she has a brain tumor (had 2, but they got one out...then had surgery to remove 70% of the 2nd, most aggressive one. Glioblastoma (sp). ) She can go thru Chemo/Radiation...or even get Immunotherapy...but she is 76. The treatments offered would be very difficult in her current state. I don’t think she knew who I was yesterday when I visited her, and her speech is garbled. She can count to 10, but little else seems to come out of her mouth that makes sense. The family has chosen to take her home to Hospice care...not an easy choice, but the right one...why make her suffer more in her last days? No matter whether there is data or not...END of LIFE care is always difficult. Not sure you can tell a doctor in an office when you are healthy what your plans are...there are too many variables. Sorry...I’m just venting...still so saddened by my friends sudden demise.
Several considerations here:
1) Some people are on government Medicare, Medicaid, CHIP, VA...government programs. Others are in heavily regulated private insurance. Others are in medishare and direct pay which have much less government regulation. Others have nothing. They are self-pay til they run out of money.
Should end-of-life be different depending on where the money comes from, who pays? A pure libertarian says nobody should be forced to pay the medical care of another person. We will never get that libertarian. But what about a modified libertarian position? We will force taxpayers to pay for care up to a certain threshold and no more. After that, if private charities, family members, etc want to pay they can. One could buy an end-of-life insurance rider to a normal insurance policy.
2) Garbage-in-Garbage-out. I deal with healthcare data, data warehouses and statistics as my career. There is a lot of bad data. Even with good data, famous healthcare analytics firms that can play chess and Jeopardy can’t do 8th grade math in healthcare. What level of error would we allow in predictive analytics for life and death decisions? 1 in a million? 1 in a thousand? 1 in ten? 1 in 3?
3) Predictive Analytics, especially in healthcare, is filled with a lot of subjective bias in the models. Is the life of an important politician or business man or much loved celebrity more valuable than the life of a non-productive person who has been on welfare all life? or more valuable than a person who has enjoyed white male privilege all his life and now his privilege should run out? Is the life of a prison inmate less valuable? the life of an illegal immigrant? A refugee? Who decides the criteria?
4) The issue is much broader than just end-of-life. The Medpage website recently published an article on medical decisions in prison. The doctor argued that most prisoners have liver disease. But most who have liver disease will not be in a critical stage for many years in the future. They should be ignored and only those with severe conditions who also have the prospect of successful treatment should be treated.
Because treatments take many months, prisoners in for just a few months should not receive treatment because they will be released before the treatment can be completed. Of course, taxpayers pay for the treatment of prisoners.
5) Predictive Analytics are taking over many fields. It is a tool that can be used skillfully or unskillfully. And it is just a tool. Will Predictive Analytics replace “I saw it on the internet. So it must be true.” or “I learned it in Public School. So it must be true.”
Predictive Analytics says Clinton has a 95% probability of winning and Global Warming has a 100% probability for a 1 degree celsius increase, 80% for 2 degrees, 50% for 3 degrees. Predictive Analytics is based on models. AI is just Predictive Analytics on steroids... and still based on models. Those models are built by humans with bias, as we who follow politics are well aware.
Will we let Predictive Analytics take over our society? Why have an expensive election if Predictive Analytics can acurately predict the winner. Nate Silver just needs to tweak his model a little bit for 2020 and we could avoid a lot of expense and hassle.
*The percentages for Global Warming are illustrative only and not actual.
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