When I receive a letter like this, I never know from the salutation if it will be a complaint or something else. This one is clearly something else, and I want to share it with you. Those of you who work in hospitals have doubtless heard similar stories; but for those of you who do not, it provides an insight into the dedication and thoughtfulness of the kind of people who work here and in other places in Boston and throughout the country. It also implicitly provides several pieces of advice to all of us who will go through the experience of terminal illness with a loved one.
Dear Mr. Levy,
My husband was a patient in your hospital in late January through early February 2007. He arrived at BIDMC via a MedFlight from Florida. We, myself, my two sons and their wives, and our BIDMC primary care physician felt that the small community hospital there was not able to deal with the complex issues that my husband seemed to have.
Dr. V continues to be our primary care doctor even though we moved to Florida. We communicate to him via PatientSite and have our annual visits with him each summer and he was constantly aware of my husband's condition while in Florida. He arranged for a hospital-to-hospital admission. We arrived very late on Wednesday January 24th. My husband underwent many tests on Thursday and Friday. We were given a diagnosis on Friday evening.
The diagnosis was not one we wanted to hear; lung, liver and bone cancer, but a course of action was set in place. My husband was to have radiation therapy starting on Monday January 29 to reduce his back pain. The nurses who took care of him were all professional and kind to him and kept me continually informed. They made sure that he was heavily medicated before the transport through the hospital and in radiation treatment, which sounds like a trivial compliment but was actually of utmost importance to minimize the suffering caused by the bone cancer and exacerbated by movement. The nurses in radiation oncology were wonderful and did whatever they could to reduce his pain and make him as comfortable as possible.
On Friday, February 2nd, it became apparent to myself and my sons that my husband was not doing very well, and a CAT scan was scheduled to determine if he had pancreatitis. We asked for a meeting with Dr. X, the hospitalist, to tell us what his condition was at that point. I am sure this type of situation is never easy for a doctor, but Dr. X very clearly and compassionately indicated to us that my husband only had a few days or weeks left to live due to the cancer in the liver being so aggressive. We discussed possible actions with Dr. X and decided to halt all invasive treatments, a course that my family has long agreed to. Dr. X also set up a meeting between us and the palliative care team for later that afternoon. Seemingly within minutes Dr. X had the wheels in motion. All scheduled tests and treatments were cancelled, IVs were stopped and, most importantly to us, had us moved to a private room. Her action was stunning, and we cannot say enough about how fortunate we were to have her during this most difficult time.
We met with RN L that same day. The palliative care folks seem to be a special breed of people doing an incredibly difficult job with kindness and compassion. L promised us that pain relief strategies could be altered such that my husband was not in a drug-induced stupor yet still be relatively pain free. She also stated that we should use the window of opportunity to have friends and family visit as much as possible while he was clear headed because it was all going to be a façade and the cancer would be working just as aggressively though it would not appear so. She was eventually proven correct on all counts.
When my husband woke up Saturday morning he was quite clear-headed for the first time since we arrived back in Boston. We all got to talk with him, and he got to enjoy his children and most importantly, his grandchildren. The private room was wonderful, as we could just close the door and have fun with the grandchildren. He seemed so well that we all expected to see him get up and walk home, giving us pause to our decision to stop treatment. L and Dr. X reminded us, however, that this was just a fleeting condition and that we were doing the right thing. We just cannot write enough times in this letter how great these folks were to us.
L had delivered what she said she would, some very quality time with my husband. Also, I want to stress that because he was able to be on palliative care, his last week at BIDMC was less stressful for both of us. This is an incredible service that makes a very difficult time as humane as possible. These people deserve all possible accolades for their incredible efforts. In general, everyone from the cleaning staff, dietary staff, transporters, medical assistants and nursing staff, were kind and wonderful. So much for the thought of the impersonal big city hospital.
My husband was moved to a nursing home on Friday February 9th. He passed away on Sunday February 11th. Thanks to the efforts of the team, we were at least able to enjoy our final week with our husband and father and he was clear-headed and joking until the day he left BIDMC. We will forever be grateful for that.
That is an incredibly wonderful endorsement of your team at BIDMC, and so unlike the experience I had when my husband was ill and dying of liver cancer. He was placed in an ambulance to transport him over 50 miles to a community care center when the tertiary care facility figured out they could do nothing more for him. The ambulannce drivers, "under orders," took the longest and most traffic-laden route possible and refused to stop to give him (or me) any relief. It was a total nighmare and a painful, painful trip for him. It is a "releasing" feeling to know that there are places that treat the person, care about the person, and the family, and that using a "major medical facility" does not need to mean "de-humanization" of the patient or the family.
ReplyDeleteI'm glad that you were able to provide such wonderful and caring care, but the whole premise of why they were at BIDMC was flawed. They were looking for a better medical outcome which failed to materialize. I would hope that caring, compassionate hospice care with appropriate pain relief is available in Florida without the need of a private jet ride to Boston plus intensive care before deciding on this course of action. Ask yourself how much was spent on this case by the family and the various 3rd party payers. Was it worth it. Now go down to your ER and look at the people without insurance and ask how many years of coverage could have been paid for if this gentleman would have stayed in Florida and the difference applied. This kind of misallocation of resources contributes significantly to the mess in our system.
ReplyDeleteWhile you raise a good general point, in this case, the family paid for the flight out of private funds, not insurance. Also, the small hospital at which the husband was staying did not have the capability to provide the diagnosis in this case, or the kind of curative treatment that might have been possible for this or other kinds of cancer. As noted, once they understood the diagnosis, they adopted exactly the kind of approach you recommend.
ReplyDeletePlease post a letter from a very angry and unhappy family.
ReplyDeleteElliott,
ReplyDeleteI am the son of the patient in this letter. Paul explained our decision quite well. The hospital in Florida could not give us a definitive diagnosis other than he had lung cancer. Their prognosis was 6-12 months, possibly more. What was really frustrating to us was that he was admitted due severe back pain. He had a few tests including an MRI. The radiologist noted a mass on his spine and noted that it was consistent with medistatic bone cancer. The doctors, including a pain doctor weren't convinced of this finding so they ordered a bone scan. The bone scan proved to be negative. (My wife who has been an MRI tech for 18 years told us that MRIs were very accurate and that the radiologist was probably correct in his assessment). The doctors tried different treatments which did not work or only worked for a few days.
On top of that he had either a blockage or ileitis in his intestines. They couldn't tell us. He had a CT scan which was inconclusive. But the scan caught the bottom of his lung and this is when they discovered the lung cancer. It also bolstered the findings of the radiologist since mets to the bone is common with lung cancer.
His health was failing due to the intestinal situation, not the cancer. The doctors just didn't have any answers. My father's doctor, who located in the Boston area, doesn't have much faith in bone scans and believed that he had medistatic bone cancer. Because of that my mother was trying to find a way to get my father back up here. A friend of hers provider her with information about the med flight. The doctors all agreed that if we could afford to fly him back then we should. They could do nothing more for him. And mind you they felt he had upwards of a year to live with good quality of life.
It was through great personal expense that my father was flown here. Medicare, insurance nor any other finacial assistance was used to pay for the flight.
We brought my father here to get a definitive diagnosis. We had every reason to believe that there would be a better outcome then what would have been the case in Florida. We got our diagnosis. They confirmed the lung cancer, stated definitely that it had metastised to the spine (and as my wife and radiologist noted was so blatantly obvious to see). We also discovered that it had also metastised to his liver.
The prognosis was closer to six months than to a year. The one thing we all wanted the most was for my father to be able to get up and walk around, something he hadn't been ablt to do for two months because of the pain. The doctors here thought that radiation therapy would shrink the spinal tumor enough to alleviate his pain and allow him to walk. We had only gotten through four treatments when we realized that the treatment wasn't going to work. It was also noted that there were other issues related to the cancer going on as well. This is when the decision to stop treatment and move to palliative care was made.
We could have moved forward with the radiation treatment and chemo, home care, visiting nurse and/or nursing home care. That would have all been a waste of time and money. So we didn't waste all of those resources. Those treatments probably would have been administered in Florida since we had no idea how dire his situation was, though his intestinal situation may have ended up killing him rather than the cancer.
Elliott, you ask if the money spent was worth it. I won't speak to the money shelled out by insurance because everyone's opinion on that could be different, but I can tell you without an ounce of doubt that the money WE spent on the flight was well worth it. And there's no telling how much money would have been saved by insurance if he stayed in Florida.
And another note, we were looking to have him transferred to the Medical Center in Orlando. The doctors told us that the community hospital was part of a hospital network and the Orlando hospital was the nexus of that network. They told us that weren't likely to get a different diagnosis or different treatment plan there.
It came down to this. We had no confidence in the care provided by the hospital in Florida. My father's doctor was affiliated with BIDMC, we have a history with BIDMC and a great deal of confidence in BIDMC. My father was 69 years old and otherwise was in good health, not 89 and frail. They couldn't tell us what was truly wrong and we came home to get the right answers.
Sorry for the long post.
I am a nurse at the BIDMC, and I was very involved with this patient at the beginning of his stay. Let me begin by offering my condolences to his family.
ReplyDeleteI was moved by the love and dedication that this family had to each other. I would like to respond to Elliott's comment. It is unfair to say that there is any expense (personal or third party) that should have been spared. Hopefully, you never have to have any experience like this with a loved one. But if you were to, I can almost guarantee that being at a place that was providing you with absolutely no answers and being as sick as this man was at such a young age is extremely frustrating. I am willing to bet that you would also want your loved one at a place that you knew could provide these much needed answers, and expense should not be an issue.
As for the insurance issue, this is a problem throughout the country. I can assure you that if the insurance companies saved billions by not treating cases like this aggressively, they would not be voluntarily opening their wallets to help all the underpriveledged people obtain health insurance. It would simply mean a bigger paycheck for more of corporate America.
I commend the courage, faith and dedication of this family to be able to do the right thing for thier loved one. I beleive that if more people held high family (values that I observed of this family first hand), and less value on money, this world might be a better place!
I apologize for any insensitivity shown in my post. The family is to be lauded for the courageous way they dealt with this situation. BIDMC should similarly be recognized for the compassionate care they provided. I do disagree strongly with the comments suggesting that economics should not play a part in healthcare; it most certainly does and that fact should be acknowledged openly and addressed.
ReplyDeleteThe tension between the private decisions and outcomes of patients and the goals and results of a better public health policy is clear. Without knowing the full story, it was inappropriate to use this particular post as a forum to engage in that debate.
Elliott,
ReplyDeleteThank you for your very gracious note. No apologies necessary: Blog postings are short by natue and necessarily leave out key details, and so you were not at all out of line to reach the conlcusions you did.
Paul