A Painful Goodbye: End-of-Life Care in the U.S. Healthcare System
The difficulties around healthcare in the U.S. remain as complex as ever. I have spent the last two months experiencing those in a very personal way.
Twenty-two years ago, a close family member—let’s call her Millie—was diagnosed with cancer and given a poor prognosis. She beat the odds and survived. This summer, she was again diagnosed with cancer. This time, the same aggressive treatment that helped save her life two decades ago may have helped trigger a heart attack. Chemotherapy drugs are not specific to cancer cells. They are toxic to the whole body in different ways.
Millie’s cardiac symptoms were not obvious because she was extremely ill from the chemotherapy and, by the time that anyone realized what was happening, she was in critical condition. On a recent Saturday morning, she was transported from the hospital where she was undergoing the cancer treatment to one with a large, cardiac-specialty facility.
The cardiac center is only a few years old and has become well-known regional center for care. Patients are routinely transferred from other medical facilities due to the availability of specialists and equipment. It is housed in a hospital that was in the top half of Fortune’s 100 Best Places to Work for two years in a row. Last year, the same hospital began terminating employees (after which it did not make Fortune’s list), and reportedly wrote off over $100 million of unreimbursed care and unpaid medical bills from patients.
On that Saturday morning when we were there, the cardiac center was eerily quiet. Later we learned that it was no longer routinely staffed on the weekends. Everyone involved had been called in for the admittance.
In the intensive care unit, or ICU, they inserted a balloon pump into Millie and started her on medication to keep her blood pressure elevated. The procedures stabilized her and undoubtedly saved her life, but that is only the beginning of the story.
For the next two weeks, Millie remained in ICU. Family members were called in to say goodbye, including one of our sons from overseas. Millie remained stable but, according to the doctors, this was thanks to the life support system she was on.
Balloon pumps are typically only left in place for 48 hours and there are apparently reasons for that. They are inserted through an artery in the groin, just like for an angioplasty, and then left in place to assist the heart. In Millie's case, the pump took care of every third heartbeat to keep the heart going. When you do that, though, you restrict blood flow in other ways. The medicine keeping Millie’s blood pressure elevated also focused blood flow to the heart, but at the sake of restricting it from her extremities—primarily her feet.
For a number of reasons, Millie remained on the heart pump and blood pressure medicine for more than a week. Her blood platelet count was so low from the chemotherapy that the doctors feared she would bleed to death if they removed the pump. If her blood pressure fell too low, the pump would be useless.
After being in ICU for more than a week, the doctors consulted with the family and explained that they could not leave Millie there indefinitely. She was stable, but not improving. They stopped the blood pressure medicine warning us that she might expire in just a few hours.
She did not.
A day or so later they removed the heart pump, alerting the family that “this was the only thing keeping her alive.” After many tears and goodbyes, we all left the room expecting the worst when we returned. Instead, Millie opened her eyes briefly and merely said, “So…?”
For the first week in ICU, the cardiologists were mostly in charge. After removing the heart pump, it became more questionable. Cardiologists continued to follow Millie’s case, but there were also intensivists (specialists in intensive care) and hospitalists (specialists in general hospital care), along with teams of assistants, nurses, para-professionals and hospital staff of all kinds.
Whatever coordination of care you might assume in medical settings, specialization still creates fragmentation. On any given day when we arrived to visit, there was no telling which doctor had changed what medications. Every medication has a target effect, but also many side effects. Combinations of medicines create all kinds of complications. Some pain medications interact with anti-anxiety drugs to cause hallucinations. Visions of loved ones and previous life events are also common end-of-life events. Sorting out one from another was almost impossible. There were moments of absolute clarity followed by delusions.
There were innumerable lessons from the two weeks in ICU. Doctors deliver procedures and treatments. Specialists stay focused on their specialties. Nurses help with treatment, but also focus on care. Levels of training and certification often have little relation to the effectiveness of what is provided to a patient.
One of the first ICU nurses who we encountered was a young male who was not only skillful but extremely attentive to both Millie and the family members. It turned out that he was still just working on his bachelor’s degree. Two other nurses we had to ask to leave the room because they were talking loudly about personal plans for later in the day while they checked monitors. Some doctors who get stuck with call on the weekends shouldn’t bother. It’s not helpful to show up with a lousy attitude because you’d rather be someplace else.
After Millie had survived the removal of all “life support” by the doctors, they decided that it was time to talk about palliative care, or “comfort care.” They transferred her from ICU to a regular hospital room where they were no longer doing active treatment, but only focused on keeping her stable and pain-free.
Distinguishing treatment from supportive care is not as clear as I would have guessed, though. During this process Millie had developed congestive heart failure. Fluid began to build up around her heart, causing her to have trouble breathing. If left untreated, you essentially die through a combination of drowning and suffocation. They drained 500cc, or 16 ounces, of fluid from her chest and started her on Lasix to stop the fluid build-up.
It is also worth noting that Millie had updated her living will just prior to her hospitalization. Again, this is not as clear or simple as I assumed. She specifically wanted no heroic, life-saving measures and no long-term life support. My vision of life-support, though, was something like a person in a coma on a ventilator. The choice would be when to “pull the plug.” It is a much different question when you are talking with a conscious person about ending his or her life.
Millie had been in a regular hospital room for about two weeks when I stopped by for a quick visit. I was informed by the nurse that she was being discharged to another facility. There had been brief conversations about that possibility when it appeared that she was going to live longer than expected, but no specific plans set. There was no meeting with the family and no explanation from the doctor who signed the orders. We could only surmise that no active treatment meant no active payments to the hospital other than daily room costs and that it was time for her to go. It was left to Millie’s nurse to give her the news and arrange the transport. To her credit, the nurse went out of her way to help stall the process, and we were able to see the new facility and arrange for the move the next day.
The new facility was both long-term care and rehab. Millie’s physical condition was still stable and she engaged in rehab to the point that she could, making some small improvements. After another week, though, the compounding effects took over again. Millie was on an extremely high dose of Lasix along with other medications. Lasix depletes potassium and, over time, can cause renal failure. Taking massive doses of potassium made Millie too nauseous to eat, which created its own new spiral.
The larger picture was still bleaker, though. The combination of heart pump and blood pressure medication, which had saved Millie’s life, killed the tissue in her feet. Her toes and parts of her feet turned black, which the vascular specialist finally determined would probably require amputation. Her cardiac condition had stabilized, but only with high doses of medication and limited functioning. And she was still facing breast cancer, which had now gone untreated for an extra month.
The point of this writing is really about choices. Debates continue to rage about medical costs and care. According to American Medical News, five percent of Medicare patients who die each year account for 30 percent of Medicare costs with the highest amount of expenses—roughly 78 percent—typically occurring a month before the patient's death. That would seem to imply some obvious, if not easy, choices that have to be made. From my experience these last two months, I would say that the choices are neither obvious nor easy but, in the end, we have to make some.
I have no idea what the costs for Millie’s care have been. It will probably be months before anyone sees most of the bills. The total will probably equate with the cost of a house. Question is, just how big will that house be? The majority of the charges will be covered by Medicare, which will add to the costs now being argued about around the country.
There was never a question about a single charge during the entire month in the hospital. From a consumer standpoint, maybe there should have been. I have no idea, though, how that would have been handled or what different decisions might have been made. As I said, it is not simple to have end-of-life discussions with someone consciously talking to you. The value of the time that Millie has had to spend with her children and grandchildren and many long-term friends would be hard to calculate.
There is an end to this story, though, and in the end, Millie did seem to make her own decisions. We heard numerous stories along the way from both doctors and nurses about patients they had known. These were not medical explanations, but stories about life and death. It is not unusual, apparently, for people at the end of life to be ready and to know when it is time.
Millie passed away this morning at around 5:30 a.m. It was peaceful as she had wanted. She had said goodbye to everyone that she could and had started withdrawing in the last couple of days to begin her new journey. It may be that the biggest lessons for healthcare have little to do with medicine and much more to do with care.