Patient Suffering, Persistently Prolonged

His life was miserable and there was no hope for improvement. There never is for nonagenarians with terminal illness. His failing kidneys could be supported with dialysis, but they would never recover their function. His damaged lungs could be supported by a ventilator, but they would never be strong enough to support normal life. His damaged brain, crippled by dementia and recurrent strokes, would never again allow him to regain speech or understanding. His quality of life was below what any reasonable person would desire, below what he had previously told others he would want and yet the doctors continued to do everything they could to sustain him in his suffering state.

Day after day a steady stream of physicians entered his room in the ICU. They often did not speak to him, for he was unable to reply. They checked the readouts on the machines, briefly applied their stethoscopes, and reviewed the day’s lab and x-ray reports. They entered their “findings” in the medical record, using words such as “stable” to describe the patient’s poor condition, and then moved on. A few of them, aware of the futility of their actions, wrote faint words of protest, saying in the record that the patient would be a good “hospice candidate” or that there was “little benefit” or that “comfort care” would be reasonable.

The boldest among them addressed the patient’s daughter. She kept a near constant vigil at the patient’s bedside, questioning every action and every medication, every turn of a dial or push of a button and documenting every response in the notebook that never left her side. The bold ones tried to encourage the daughter to accept the gravity of her father’s condition, the lack of improvement, and the reality that 90-year-old men with disease this severe did not get better.

She was always forceful in her reply, “Do everything!” By everything she meant everything. She wanted CPR, electrical shocks and breathing machines if his heart stopped, dialysis for his kidneys and feeding tubes for nutrition. Her father was NOT going to die on her watch.

And so the dance continued. Nurses were demoralized. They had chosen their profession out of desire to provide comfort and care and now found themselves prolonging the suffering of a man who seemed to have no advocate, no one who cared enough to say “enough.” Physicians knew they should let the patient go, to put an end to his suffering by getting out of the way and allowing the natural course of life to occur but they felt powerless in the face of the angry daughter with the power-of-attorney form. Weeks went by, hundreds of thousands of dollars were spent achieving nothing, and despair and desperation mounted.

So they called me.

I am the chairman of the ethics committee at my hospital. Over the last two years my fellow committee members and I have worked to develop policies and procedures to deal with situations such as the one in which this poor old man had found himself, policies that address what doctors can do when there is nothing to be done.

I responded as I do every time I receive these calls. I reminded the physicians that they are not obligated to do things that do not work, that no one has the right to demand futile treatment. The truth of medicine and of life is that not every disease can be cured. The ultimate disease, old age, can never be defeated. I reminded them that there are times when the only thing left for us to do is to let a dying patient die in dignity and comfort. I guided them through the process of documenting this reality in the medical record and informing the family. Then I met with the family.

The family conferences usually fall on my shoulders. They are almost always intense encounters characterized by accusatory outbursts and rage. I have been accused of everything from neglect to euthanasia and murder. I do my best to let the angry words bounce off of me and to gently affirm their feelings and still confirm the realities of their loved one’s illness. Sometimes there is reluctant acceptance, many times there are further demands and I am forced to explain that their demands will no longer honored. It is a grueling and heartrending process. Regardless of the process, ultimately the patients dies in comfort and with as much dignity as we can provide.

With each case I find myself wondering, “How did we reach this point?” These circumstances are so devastating to all involved, one would think we would find a way to prevent the suffering and pain that patients and families endure. How is it that we don’t?

In my experience there are several factors.

1-      Patients and families do not prepare for death.

In spite of its certainty, many families live in denial. I have been told by families that their 94 year old parent wanted to live forever. The irrationality of the statement was lost on them. In spite of the efforts of physicians and the mandates of Medicare to discuss end of life issues a significant percentage of patients do not communicate their wishes in advance. Even when they do, they often assign decision making responsibility to family members who are ill-prepared for the task.

2-      Fear

Doctors are afraid. They are afraid of conflict, afraid of negative interactions and afraid of lawsuits. In every end of life consult in which I am involved this is the major issue of physician concern. The irrational fear of being sued causes physicians to do things they know are wrong, things they know are worthless and useless, in order to placate demanding families.

3-      Time

Doctors are busy and dealing with angry families can take several hours out of a doctor’s day. I recently consulted on a case for a physician who texted me that he was not sure when he could return my call because he had 28 hospital patients to see that day.

Every hour a physician spends dealing with an angry family is an hour that he cannot spend with sick patients who might actually benefit from his care and attention. It is easier to spend a few minutes a day continuing the status quo then it is spending hours fighting a family.

4-      Lack of training and support.

It is hard to stand alone against an angry family. Their words and accusations may be irrational and unreasonable but the accusations still hurt. Most physicians have no training in how to deal with these circumstances. Further, most of these patients have multiple physicians, and one weak-kneed physician and undo hours of relationship building and persuasion. It is a terrible feeling to summon up the courage to confront only to find yourself undermined by your colleagues. It is easier to not make the stand in the first place.

5-      Cultural inertia

This is perhaps the biggest challenge of all. Change is always difficult. Physicians and hospitals have been yielding to unreasonable demands for generations. Inaccurate beliefs about legal liability, decision making authority and allowing natural death are deeply ingrained in hospital culture. Convincing physicians that it is okay to do the right thing is a daunting task.

My colleagues on the Ethics Committee and I recognize these challenges. As difficult as they are, we are committed to overcoming them, one important patient at a time.

-          Bart

PS: The case above is real. Minor details have been changed to ensure confidentiality. It is typical of the cases for which I am asked to consult. If there is any important take away from this post, it is that we ALL need to make our wishes clearly known to our loved ones. It is a gift to them and ourselves.

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Misunderstanding Marriage

He loved her and told her she was his “why”, the reason he did everything that he did, but he was not ready to marry her. There was a lot he wanted to accomplish first. He wanted to be more established in his career, wanted to buy a house and wanted to give her a chance to finish her education. Once he had his life in order he would propose.

I told him I did not understand his answer and asked, "If she is the person you want to spend the rest of your life with, why isn’t she the person you want to build your life with?" I told him I wondered when it was that society decided that marriage was couldn't do until you had it all together.

When I met Lisa, my life was nowhere near “together” status.  I had almost no money in the bank, was working part-time while I went to school (making just enough to survive) and sharing a one-bedroom apartment with a roommate. I had just finished my first year of community college and wasn’t even sure of my major or ultimate career choice. Lisa was working full-time as a dental assistant and living at home with her parents. None of my deficiencies factored into our marital decision.

For us, getting married was not about what we had accomplished or what goals we had reached, it was about reaching our goals together. We wanted to be husband and wife, to share every step of life’s journey together. We had no idea what the final destination would be but that did not matter. The one thing of which we were certain was that we wanted to find our future together. It was about who we were going to be and what we would become and the family we would have.

In conversations with this young patient and with so many others like him I have learned that young people do not view marriage as a “we” thing anymore. For many it is a “you and me” thing, an “I’ll be me and you’ll be you” arrangement. This focus on self-fulfillment and self-realization is not fertile soil for growing a healthy marriage.

Individual success and achievement are not the indicators for when commitment should be considered, nor are individual happiness, personal fulfillment and feelings of happiness the standards by which marriages should be measured. When individual needs, desires and accomplishments are of primary importance, committed relationships are in jeopardy.

Perhaps this is why so many of those contemplating divorce speak of their personal disappointments. When people say, “I’m not happy,” or “I’m not fulfilled,” or “I don’t feel the way I used to,” they are showing a profound ignorance of the nature of marriage. Marriage should never be about looking out for oneself. It should always be about one selfless union.

- Bart

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Open Mouth, Insert Pastoral Foot

Communication is hard. It is especially difficult to speak clearly when one has his foot in his mouth, something Eugene Peterson learned a few weeks ago. Peterson is a retired pastor well known in Christian circles for his paraphrase of the bible, The Message. At the age of 84 he is no longer active in ministry on a regular basis but he recently gave an ill-fated interview to Religion News Service. In the article he was asked about his views on homosexuality and gay marriage. It was then that he unwittingly seemed to swallow his toes.

In his answer to the question about homosexuality he said- “we’re in a transition and I think it’s a transition for the best, for the good. I don’t think it’s something that you can parade, but it’s not a right or wrong thing as far as I’m concerned.”

To the follow up question on whether or not he would officiate a gay wedding he replied, “Yes.”

The backlash from the Evangelical Community was both intense and rapid. Respected Christian leaders took to their blogs and other platforms to denounce Peterson, many for his statement that the issue was not a “right or wrong thing.”

His words implied either a dramatic departure from traditional Christian teaching or the reality that Peterson had never held to such teaching to begin with. Whatever one concludes about the morality of a specific human behavior, Biblical faith does not allow for such fuzziness. A religion that teaches about sin and its eternal consequences will of necessity require clear teaching about what is and is not sin.

It seems that Mr. Peterson understands this truth, for he retreated from his doctrinal haziness the next day, saying that he would not perform a gay wedding and that he affirmed “a biblical view of marriage: one man to one woman. I affirm a biblical view of everything.”

Although he did not fully retract his statement, his response was embraced by many religious leaders. Those who believe same-sex relationships are consistent with the Christian faith were not similarly pleased. Some felt betrayed and abandoned. One writer went so far as to say Peterson’s retraction would “be used to fracture relationships, to kick people out of churches and tell them God is disgusted by them,” and that “Peterson's good intentions will not change the destructive impact of his words.”

Peterson’s struggle has implications for all people of faith. As our culture evolves in an increasingly secular direction we will all be required to answer questions about sexuality. We will be invited to gay weddings, we will have gay friends and co-workers, and we will be asked, “What do you think?”

I arrived at my answer years ago. I think the actual question, the important one that underlies the sexual question is, “Where do our values come from?” Do our values come from God, and remain as constant as he does? Or our values based on evolving cultural beliefs and attitudes and thus destined to change?

As a Christian I believe that God’s position on sexual issues is constant. I believe that the teaching of the Bible is meant to be a definitive, enduring and authoritative guide for life and faith. Because of this I believe God’s plan for sexuality is that it be expressed in the context of heterosexual marriage. This belief may be considered oppressive, bigoted and hateful, but for those who profess allegiance to scripture, it is the belief most consistent with Biblical teaching. There is no option but to affirm it. Contrary to the response of Eugene Peterson, it is a right and wrong issue.

What about those who take the other side, those who believe that loving same-sex relationships are consistent with God’s plan for humanity? People have every right to that position, and to express it passionately. If they are honest, they will also declare that they no longer view the Bible as inerrant or God as unchanging in his morality. Further, they will need to abandon traditional understandings of right and wrong, or to put it in religious terms, of righteousness and sin.

What no one can do is find a comfortable middle ground on which to stand, for no such ground exists. Ask Eugene Peterson.



Your Doctor Just Might Disappear

Many Family Doctors hate their jobs. They love taking care of patients but direct patient care is on the decline. More and more of each day is spent on administrative work. Staring at a computer screen all day entering useless data that has nothing to do with the patient’s condition is no one's idea of rewarding work. Busy work has taken the place of diagnosis and management of illness. Doctors who routinely saw 25 patients a day 20 years ago (with time to spare) now find themselves struggling to see 15.

At a recent physician meeting I attended I was surprised to hear of how bad things have gotten.  Many of my colleagues are spending over three hours a day in charting and other administrative tasks. Work days routinely stretch well into the evening hours with one doctor not leaving the office until after 8 PM (even though his last patient was scheduled at 5).

It is not surprising then that many doctors are looking for a way out. Doctors who once planned on working into their late 60’s are analyzing their retirement plans in the hope that they can retire as soon as possible. When these doctors retire they will leave behind a shortage of primary care providers. The impact on society will be profound, as the resultant lack of access will leave patients waiting weeks or longer to see a doctor.

Those who are too young to consider retirement are looking at other options. “Direct Primary Care” is on the rise, a style of practice in which doctors do not accept any insurance at all. Patients pay cash for the services they receive. In exchange for the personal service and attention doctors charge rates well above what they receive from insurance providers. Physicians also care for far fewer patients, making access, especially for poorer patients, even more difficult.

This dissatisfaction and work stress is in large part due to the advent of electronic medical records. Hailed as a way to improve documentation and limit error they have instead become a burden and a curse. Insurers, particularly Medicare, can now easily review doctor’s charts for “quality”. This sounds wonderful, but the definitions of quality set forth by these outside entities have almost no relationship to actual patient care.

Each month I get an updated report on patients who have not received “needed” tests. It is disheartening to see my performance score lowered because patients with terminal cancer and end stage Alzheimer’s Disease have not had a recent colonoscopy! I find myself wondering, “How did it come to this?”

The loss of longstanding patients is another cause of physician burnout. Primary care physicians typically enjoy having relationships with their patients. More and more we see patients we have known for years leave our practice due to a forced change in insurance. In my practice we see a large number of new patients each week without seeing a significant increase in overall volume. New patients bring new stress as doctors must work to gain confidence and deal with the insecurity of making diagnoses in a patient they do not know well.

Making matters worse is the reality that there is little chance of things getting better. As with many problems in America the problem is likely to get worse over time, ignored until a crisis is reached. None of the health care options under consideration by the government, not Obamacare or its proposed replacements, do anything to address these causes of physician burnout.

This is not to say there are not things patients can do to help their doctors. One of the best ways is for patients to do what they are asked. Get your mammograms, pap smears and colonoscopies the first time you are asked. Go to the lab for your blood work when your doctor requests it, without having to be repeatedly reminded. Keep your appointments and follow up when asked. This seems simple, but it can make a difference!

Finally, be kind. They won’t say anything to you, but your doctors may be hurting. Patience from our patients is desperately needed for doctors who feel overwhelmed.

- Bart

35 Years of Heart

Not all marriages last for 35 years, especially when the couple only knew each other for 5 months on their wedding day. But here Lisa and I are, celebrating 35 years together, much older and even more in love with one another. We often ask ourselves, “How did we do it?”

I think it comes down to heart. Lisa has the most amazing heart I have ever seen, as well as an ability to see the hearts of others. She has a tenderness and compassion for others that flows naturally from within. This was readily apparent to me even on our first date, so much so that I found myself thinking, “This is the type of woman I would want to be the mother of my children someday.”

She is incredibly genuine has a remarkable ability to see into others, to see people for who they really are, not for who they pretend to be. With me, she saw through the jokes and bluster and saw a man who in his heart who wanted to be good. It was the goodness in her heart caused me to fall in love with her and allowed her to fall in love with me.

Over the years there have been many times when I struggled. Insecurity and anxiety have caused me to be defensive and short-tempered. She loved me anyway. More than that, even in my worst moments, she never criticized who I was, never attacked my character, never stopped believing in me. She was strong enough to challenge my actions but always kind enough to never question my heart.

Because of her love and support I find myself closer to being the good man the young Bart hoped to be. I always wanted to be a father but my upbringing in an abusive home made parenting difficult. Lisa  taught me what it meant to be a loving parent. She consistently modeled patience, kindness and grace with our children, and delighted in their personalities and idiosyncrasies. Just as she did with me, she saw their hearts and loved them for who they were and who they could be. When my anger and insecurity made it hard for me to see the best in my children she was my eyes.

I think this is how we made it, by believing in each other’s hearts. When two people love each other enough to believe in one another, even in the difficult times, marriages last.

- Bart