Medical Maximalism

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Everyone has a right to be stupid. Some just abuse the privilege. – Dave Barry

Life is pleasant. Death is peaceful. It’s the transition that’s troublesome. – Isaac Asimov

My 84-year old father, who has advanced Parkinson’s disease, fell and broke his left arm and hip this past week.  Only four months ago, in July, he fell and broke his right arm and hip. Breaking four major bones in your body within four months would be bad news for anyone, even someone in their prime.  But for someone who is 84 and has Parkinson’s, this is a very bad card to be dealt.

After falling in July, making it through both arm and hip surgery, and coming through six weeks of painful rehab to the point where he could walk 25 yards down the corridor of his assisted living facility, with a walker and “positive” support from a physical therapist, my father chose to attempt walking around in his room without any assistance. He has a call button, it hangs around his neck – but he chose not to use it. His assisted living facility is top of the line and they are paid to come when called and to help him do everything. But he didn’t call them last Tuesday.

He was well aware of what happened four months ago and the serious risk of falling again. He is not senile, and does not have dementia. His mind is sharp most of the time, even though he often cannot speak because of the Parkinson’s. He had fallen the very day before, and by the grace of God, his caregiver had walked into the room and caught him in the act of falling. They both went down, with her breaking his fall. So we believe he was well aware of the risk. Regardless of all of that, he chose to try to move about his room independently, and in the attempt to pivot from the TV to the chair, fell like a tree on his left side. This time the consequences were severe; a broken left humerus at the elbow joint, which is inoperable, and a shattered left hip ball.  The humerus is the large, main bone of the upper arm. Many of the powerful muscles that manipulate the upper arm at the shoulder and the forearm at the elbow are anchored to the humerus. Movement of the humerus is essential to all of the varied activities of the arm, such as lifting a spoon or a fork to feed oneself, putting on one’s glasses, and writing.

My brother, my father’s primary care giver, who is a criminal defense lawyer and a retired Marine, calls this absolute ‘gross negligence’ on my father’s part.  He and my father have a unique relationship. Scott calls it like it is, and gives Dad a lot of “tough” love. This tough love approach has worked extremely well to this point, and is probably the primary reason my Dad has done as well as he has over the past four years.

However, this time, the landscape and prognosis do not look very good for my dad. The surgery to repair the broken humerus bone was so awful that the orthopedic surgeon did not recommend it for someone of his advanced age and condition. In addition, a pronounced heart murmur drastically increased the risks of anesthesia and surgery. Without the ability to use his arms to maneuver rehab, the risk of surgery to repair the left hip ball at this time did not make much sense either. After a lot of discussion with cardiologists, trauma doctors and the orthopedic surgeon, my brother and I elected to NOT do any surgery and to have him transported back to his assisted living facility to heal as best he could.

Things got really interesting once we told the hospital that we declined the surgery. I think they were truly SHOCKED that we would choose the route of doing nothing.  The cardiologist and the orthopedic surgeon even made separate, special trips back to my Dad’s room to talk to us and confirm our decision. That is highly unusual in itself, as getting a doctor to talk to you personally, not once, but multiple times on the same day, is pretty unheard of in today’s managed care environment.

My brother is convinced that this was all about CYA – covering their asses. (What can I say, he IS a lawyer!) But I think there is more to it. In today’s managed care environment, there is a huge bias to do anything and everything available – to try every procedure possible, regardless of the additive consequences.  I don’t think they have many families who say – ‘Thanks, but NO Thanks’.

My father had been transported to the very large Vidant Medical Center in Greenville NC from his home in Jacksonville, because he had a subdural hematoma on his brain from the fall. No orthopedic surgeon will agree to do surgery when a potential neurological complication presents itself. Hence, he was transported to the large teaching hospital in Greenville, where there were neurologists who could evaluate the head injury.

There was much to be impressed about in the care at the Vidant Medical Center. There were TEAMS of doctors available to us, and their patience and detailed explanations of the injuries and options were extensive. We clearly benefited from the large teaching hospital’s deep and broad expertise – the time spent at the bedside by each specialist, and their explanations, both for us and for the wide-eyed students who accompanied them, was impressive.  Not one of the doctors who spent time with us – neurologist, cardiologist, trauma and orthopedic surgeon- ever seemed hurried or curt. Bedside manner was all-around impressive.

But with all of these teams we saw, there was not one geriatric specialist included in the mix.  My father is 84 and has advanced Parkinson’s disease. Parkinson’s is incurable and has a distinct downward progression, and my father is in the close-to-last stages of the disease. He is a shell of his former self, weighs about 160 pounds (down from about 250+ in his prime), and cannot swallow well or speak most of the time. His mobility is severely limited even on a good day, and he has to have assistance for all the basic daily living functions. Although he does not have dementia, when in severe pain or very tired, he can get confused and highly anxious about where he is and what people are doing to him.

In our four years of caring for our father since our mother’s death and his move to assisted living, we have learned a great deal about geriatric care. Elderly patients can react very differently to pain, to heavy pain killers and other medicines, and to being confined in a hospital.  In many ways, their reaction can be very similar to that of a young child. They feel pain differently and heal differently. The expectations for their path are different than those that would apply to someone in middle age. So in this first-class, state of the art teaching medical center, it was hard to believe that there was no specific support and guidance of a geriatric specialist to help inform and advise us of the options, consequences and best choices available.

So we did it ourselves.  The lawyer and the banker, the son and the daughter, talked it out on Thursday night. We identified the questions we wanted to ask, and defined the options available to us. Our goals were simple – pain management and quality of life. I was initially for the surgery, given that the orthopedic surgeon said that many people who may never walk again have hip replacement surgery solely for the pain management benefit. I just couldn’t imagine my father managing the pain of a shattered hip ball without surgery. But my brother was less positive on surgery, as it potentially required a risky cardiac balloon procedure to expand the artery so drastically narrowed by the structural flaw. If surgery was needed, he also preferred to have it done in his home town, Jacksonville, with doctors that he knew.

Even though we both have full power of attorney, my brother is the primary caregiver for my father, so I silently told myself I would yield to his wishes in the matter. I was determined that we would not argue over this.  Our mother was estranged from her only brother for years over fighting about money, inheritance and powers of attorney decisions for my great aunt and my grandmother.  So I was determined that we would do this together, whatever the decision and outcome.

An excellent article in The Atlantic magazine from 2013, entitled “How Not to Die”, calls “unwanted treatment” in American medicine the “dark continent.” In the landscape of this dark continent, patients and their representatives have to feel their way through the path, often alone, uniformed, and frankly pressured to approve procedures that may not make holistic sense.

The US medical system was built to treat anything that might be treatable, at any stage of life – even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.

The author, Jonathan Rauch, talks about The Conversation that should be taking place in such instances, between doctors and patients and their families, but which most often does not happen. He describes the situation of his elderly father, who was hospitalized while suffering from an advanced and untreatable neurological condition.

The momentum of medical maximalism should have slowed long enough for a doctor or social worker to sit down…to explain, patiently and in plain English, his condition and treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired.

Today’s doctors are not trained to have this Conversation, and they aren’t rewarded for doing so. What’s even scarier is the fact that the pressure for unwanted treatment is more prevalent near the end of life. Doctors are trained to approach their job as a “war on death”.  It is surprisingly hard for a patient or their representatives to fend off the medical system, and fight for quality of life and a “good death”.

In a September 2014 New York Times article (Panel Urges Overhauling Health Care at End of Life), a non -partisan committee appointed by the Institute of Medicine, an independent research arm of the National Academy of Science, called for sweeping change in our current system for handing end-of-life care. “The bottom line is the health care system is poorly designed to meet the needs of patients near the end of life…The current system is geared to doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly.”  This commission recommended that insurers reimburse doctors for conversations with patients on advance care planning, which is not currently covered by Medicare. Also, the reimbursement structure needs to be changed to allow Medicare to pay for home health services instead of emphasizing hospital care.

The panel called for a major reorientation and restructuring of Medicare, Medicaid and other health care delivery programs, and the elimination of ‘perverse’ financial incentives that encourage expensive hospital procedures when growing numbers of very sick and very old patients want low tech services like home health care and pain management.  Also the panel recommended that medical schools should greatly increase training in palliative care and set standards so that more doctors know how to compassionately and effectively treat patients who want to be made comfortable but avoid extensive medical procedures.

My father has a DNR – Do Not Resuscitate – directive, which simplifies things in some ways. It states that he does not want proactive measures enacted to keep him alive, including feeding tubes, intravenous fluids, etc. But once we declined surgery and took him back to his assisted living facility, we had to jump through a surprising amount of hoops to find the appropriate, proactive care to manage his pain.  The hospital discharged him very quickly, within three hours of our decision to decline surgery, but released him with minimal pain medication. He was discharged on a Friday, and for the next 48 hours we went back and forth with Hospice and Home Health Care, to try to determine what my father qualified for, all with the goal of just trying to manage his pain and make him comfortable. Note to Self – and for everybody else:  DO NOT EXIT a hospital on a Friday afternoon. Very bad idea. They throw you out so quickly it will make your head spin, and if there are mistakes or gaps in the discharge instructions, there is no one to take care of it over a weekend.

In the hospital, we were encouraged to talk to Hospice to determine if my father qualified. The Hospice nurse came out to assess my father. We told her about his history, the progression of his disease, his independence, his fight against loss of control, and his stubbornness.  She emphasized that the elderly “have the right to fall.”  If they don’t have dementia, or are not a danger to others, they have the right to not be restrained.  They have the right to break the rules of assisted living, to not call for help, and to fall flat on their face.  But those choices have consequences for the loved ones who are their care givers – and consequences for the elderly person as well.  If we’re not senile or crazy, we all have the right to be stupid. To make stupid choices, regardless of whether those choices will hurt us or the ones we love.

The challenges of caring for an elderly parent with such an awful disease as Parkinson’s are challenging, painful and elongated. It’s a long, hard road, and unfortunately, there’s no course you can sign up for on how to manage it.  You just have to feel your way through it, and the U.S. medical system, despite its immense capabilities, is sometimes really not your friend in the process. With every step, you must balance their right to independence; provide support and celebration for the continued desire for life, while knowing in your heart and mind what is surely coming, just around the corner.

While my brother and I are confident that we made the right decision for my Dad this time, we certainly never anticipated this would be our road and our responsibility. Who ever thinks about these things when they are young? But here we are, in charge of managing that damn troublesome transition between life and death that Isaac Asimov speaks of, as best we can.

8 thoughts on “Medical Maximalism

  1. Such a hard time for you and Scott. I have been down this road, I can truly empathize with your decisions and struggles. As the adult children, our ultimate hope is that our parents, who gave and did so much for us, will be able to exit this world with dignity and without extreme pain. We do what we can out of love and gratitude. Not an easy time. . . .my prayers are with you both.

  2. Atul Gawande addresses several of these issues as both a physician and a son in numerous magazine articles and his new book, “Being Mortal”. “The simple view is that medicine exists to fight death and illness . . .Death is the enemy . . . Eventually it wins. And in a war you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who will fight for territory that can be won and how to surrender when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”

    I feel for you and your brother. It sounds like you have been forced to make some painful decisions for your Dad, operating firmly in the Robert E. Lee camp. If your Dad doesn’t “qualify” for hospice care, you might look into seeing if there is “palliative” care available (a social worker at his nursing home or the local hospital should be able to give you some guidance). They can possibly help guide you and your brother and your Dad to talk about and understand the current important issues, in addition to pain management. What are his fears and hopes? What trade-offs is he willing or not willing to make? What still gives meaning to his life? What matters most to him at this stage of his life?

    Bless all of you as you travel this painful road. May your decisions honor your Dad’s life and his continuing desire to control his life, however stupid those decisions might be.

  3. Nancy- love the Custer versus Lee analogy- my brother will love that!! Right now we have Hospice engaged- initially he didn’t qualify but after three to four days of not eating they signed him up. He can be switched to home health care if he progresses and then doesn’t qualify for a Hospice . He had some good days last week but the hospice people said they would keep him on, for now, and they are able to prescribe to manage pain. We’re going down for Thanksgivig so looking forward to seeing how he is doing. Hope people won’t take the stupid decisions comment wrongly…but a key lesson for me was that they have the right to do what we would perceive as stupid things….it is their choice no matter what the consequences are.

  4. Very well thought out and written. I am appalled at the paucity of palliative care for the elderly and chronically ill; it is something we are dealing with daily as my husband is only 67, but is bed-ridden. Medicare can withdraw home services if “improvement” is not made and this leaves us with the constant fear of abandonment. It has, however, prompted some conversations with our daughters that we never had with our aging parents.

  5. wow. I love that you choose to share your story – I think you can be a ‘guide’ to others who haven’t gone through something like this. Sounds like you and your brother are doing all the right things and the communication is so important. So much going on at once – but I guess that is all part of the elderly care. I never experienced that as both my parents passed young (58 and 65) from heart attacks. Prayers for you and your whole family, and especially your dad – that the pain lessens each day if at all possible.

  6. Thanks for sharing Jeri. So very, very tough. There is a magazine called The Sun that I adore. The April 2014 issue had a couple of articles, one by author Kay Butler and one an interview with her on how modern medicine decreases our chances of a good death. She has written a book based on her father’s end of life experience called “Knocking on Heaven’s Door: The Path to a Better Way of Death”. It is good reading, as is your blog.

  7. Thanks so much for sharing your story, Jeri. The way the medical establishment cares for our aging population is appalling and an issue we all need to address as we ourselves march onward to the end of our own lives.

    Caring for an aging parent is very tough, but it sounds like you and your brother are doing what is best for your father. My thoughts and prayers are with you as you navigate what is ahead.

    Joan

    .

  8. I went down the road you are traveling twice, the first time ten years ago. I launched my late blooming writing career around caregiving issues. I’ve seen great strides taken in the arena of conversation and awareness, but much less in the practical application. Both of my parents suffered falls prior to their death. My Dad was much like yours from the sound of it. At 89 he was still trying to strengthen his leg muscles from a stroke at 66 and decided that he could go without his leg brace. His foot caught on a chair leg and down he went breaking his thigh bone. He made it through the surgery but died within 24 hours after. It all happens so fast and while I was not present to be a part of the decision making process it seemed to the deciders the only option. My mother at 97 lost her balance and fell breaking the very same bone. My sister was walking into the room but couldn’t reach her. She survived surgery, managed some rehab although she was never able to walk. She quit eating, a stomach virus swept through the facility and she died. Not the way I would like to see my life end. I’ve wondered ever since if it wouldn’t have been better to bring her home after the surgery with private care rather than leave her in a Health Care Facility. Regardless of how good they are, and how much care is provided – someone was with her throughout the day, either a sitter or a family member – there is a mood and energy about them that seems to undermine recovery.

    Like you I worried about the pain part of the no-surgery option, but the post-op pain can’t be much better. Thank you for such a clear articulation of on on-going mindset that stills needs changing.

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