My Father’s End-Of-Life Treatment: Not What He Had In Mind

(Earlier this month, we ran a piece about dangerous “transitions” in health care, that is, shuttling older, often frail and vulnerable patients in and out of hospitals and rehab centers even as their health continued to deteriorate. The piece prompted Sarah Stephens of Boston to send us a truly eloquent note about her 98-year-old father’s painful transitions at the end of his life. We asked Sarah to expand her comments, and here is her story.)

By Sarah A. Stephens

My father, Ernest F. Acheson, died in his 99th year, seven months after the death of my mother, Sally C. Acheson. Both my parents had made it clear to their children from early in their middle age that they did not want “heroic” measures adopted if they were incapacitated by accident or grim diagnosis. Their legally signed and verified “End of Life Directives” had been part of their medical records for years. These forms were comprehensive and specific; no amount of interpretation could justify the implementation of measures to prolong life after their mental and physical capacities failed. What eventually happened to my father, therefore, seemed to my sister and me ironic as well as tragic.

April 4, 2010, Oqunquit, Maine. Nine months before his death, Ernest F. Acheson holds Oisin Stephens, a great-grandson

In 2010, he had been suffering from a form of senile dementia progressively for at least 10 years, though his physical health was excellent. The death of his wife, however, in May of that year, caused him greater confusion and anxiety than he had ever experienced. Because he couldn’t remember anything, the only fact that stayed with him was a sense that something was wrong, terribly wrong, and he was very sad. Most of the time he didn’t even realize what/who it was that he missed, but sometimes he would ask, “Where is Sally?” His isolation – from the world, from himself – became increasingly apparent, as did his distress.

Early in the morning on December 7, 2010 the staff at the assisted living facility, where he lived in Maine, found him on the floor. They phoned an ambulance and he was taken to a nearby hospital, where a left hip fracture was diagnosed.

His G.P., an older man on the verge of retirement, had seemed to understand my sister and me when in the past we had spoken to him about our father’s care. We made it clear that because of his confusion, my father should be spared any hospitalization, which would only result in greater suffering. The doctor told us he would admit our father to the hospital if he broke a bone, since the pain of that injury would require surgery.

When it happened, the surgeon explained that there were two choices: keep my father in bed for 6 months as the bone healed naturally, or correct the break surgically. A hiker all his life, my father remained physically active up to the day before he fell; we knew he would never stay in bed voluntarily. With dread, but feeling under the circumstances we had no choice, we gave our permission for the surgery.

The surgery was “successful” and my father “recovered” post-operatively very well. However, his agitation – presumably prompted by pain, unfamiliar surroundings, lack of comprehension of the circumstances – increased daily. A hospital staff member was assigned to be with him 24/7, since his understanding of the situation (i.e., that he had had surgery for a broken bone in his hip, hence the pain and the reason why he couldn’t get up and walk) never lasted more than 2 minutes.

In the four weeks prior to his death, my father lived under the care of five different institutions in two states. Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life.

The social workers assigned to his case were busy trying to find a place for him to be discharged to. An acute care hospital will not provide beds for patients who need long-term care. However, no facility wanted him, of course, since the possibility that he could ever be “rehabilitated” seemed very slight, and in the meantime he was a difficult patient. Only drugs – not any reasoning – could keep him from trying to get up and walk out.

After he had been in the hospital in Maine for 12 days, a social worker phoned one morning to say an ambulance was on its way to take him to a hospital in Haverhill, Massachusetts, where his medications would be “adjusted.” The implication seemed to be that once he got on the right drugs, he would then be fit to be sent to a rehabilitation facility. The transfer was already in progress; we, the family, were merely being notified.

When we arrived at the hospital in Maine, distraught at the short notice, we asked to see the doctor who was discharging my father. A psychiatrist, he explained the reasons for my father’s abrupt discharge. According to medical practice, it was well known (from patients who could give a reliable history) that post-op pain is gone after 3 days. Given the state my father was in – he was groaning in evident agony – I began to suspect that the situation was purposely misunderstood by the professionals in charge of his care.

It was clear that there was no good future for my father: I knew his comprehension could not be improved medically; only his physical activity and his mental agitation could be subdued by drugs. Distressed myself, I pleaded with this psychiatrist that all my father needed was “care and comfort,” a phrase my own doctor had assured me was the medically acceptable option. At this, the psychiatrist looked me straight in the eye and said, “I’m sorry, but because of my own personal and religious beliefs, I am not able to discuss that with you.”

When we arrived at the Haverhill facility – which we only then discovered was a mental hospital – my father was already admitted to a ward of mostly elderly patients who, we had been told, were being treated for medical as well as psychiatric problems. However, it was there that an aide, trying to help my father to the toilet, recoiled in horror when he saw the staples still holding the incision site together, asking, “How do we get him to the toilet with a broken hip?”

Ernest F. Acheson, undated photo, circa 1966

A staff social worker then met with us. It was late on a Friday afternoon. My sister and I listened to her describe what would happen over the weekend: nothing. She seemed surprised that this new patient had come from Maine, but then remembered that their marketing person had just visited the Maine hospital. My father’s transfer was apparently the first success of their new marketing campaign.

She told us that on Monday morning we would be called for a family meeting to consider my father’s care. She also assured us that the doctor assigned to my father did not like to over-medicate patients. We never met this doctor; no doctor of the Haverhill facility ever spoke to us. We don’t know if a doctor there ever examined my father.

We saw my father on Saturday and again on Sunday. We asked staff on duty what treatments/medicines he had been given, but no one explained to us what had been done to or for my father. His distress and confusion steadily increased. By Sunday, he was hostile, even to us (we had never seen that before) and obviously paranoid. When we left him Sunday afternoon, we clung to the hope that the meeting Monday morning might clarify a way to ensure my father’s last days would not be clouded with increased physical and mental suffering.

Monday morning came, and no one contacted us. I phoned both the social worker and the nurses’ station on the floor, but no one was available to talk to me about my father. Fifteen minutes after my last phone call, my sister received a call from the Haverhill hospital to inform her that they were transferring my father to a nearby regional hospital emergency room. Why? Because he was dehydrated and had an elevated white cell count.

Alarmed – this would be the third facility in four days taking responsibility for his care – I phoned the emergency room and told them my sister and I would not give permission for them to treat my father until we understood why he had been sent there. What was happening? Who was making these decisions – and then informing us of each transition as a fait accompli? How could there be consistency of care? Was what was best for my father anyone’s priority?

When we got to the emergency department and saw my father, he was heavily sedated. In fact, he arrived drugged so completely that he wasn’t responsive until late that night. The weary doctor in charge of the ER listened to our story and convinced us that we should agree to have him determine my father’s medical status. Feeling desperate and helpless as our father’s only advocates, we signed the papers and waited. We were later told that my father was not dehydrated and that actually his white cell count was only slightly elevated. The Haverhill mental hospital had kept him the 3 nights required for reimbursement by Medicare and then got rid of him.

The staff at the regional hospital were terrific. They didn’t understand how/why my father had been dumped there, but once he was there, they took good care of him. The supervisor of nurses spent time to talk with us about our options. They were very few. Here was a 98-year-old man, drugged to the gills, suffering from dementia and the aftermath of surgery to repair a broken hip. We couldn’t take him “home” – and wherever he went he would have to go by ambulance. We agreed to have him admitted to their “Adult Behavior Unit.” Again, the idea was to “adjust his medications.” We were lucky a bed was available.

Two things soon became evident: my father’s distress increased and his confusion precluded any possibility that a rehabilitation facility would ever accept him. Despite his dementia, my father had somehow retained the old-fashioned courtesy and personal decorum of a by-gone era – being addressed by well-meaning young staff members as “Sweetie” added to his bewilderment. He hated being there, where some patients were loud, combative, and unruly. After his consciousness emerged from the medication-induced fog, he exclaimed to me, “What I want to know is, what is this place and what am I doing here?”

The staff treated him well, and with respect, but it was a rough environment. The doctor in charge, a young woman with a welcome capacity for compassion, understood both my father’s situation and my sister’s and my concerns. A few days after Christmas, when it was evident that my father wasn’t going to improve and neither could he stay there, a thoughtful and efficient social worker suggested a hospice center also in Haverhill.

When the hospice accepted him, my sister and I were relieved. The hospice staff was uniformly kind, supportive, unhurried, and caring: they provided a wonderfully peaceful place to live while dying. He died four days later, and we still regret that he didn’t get there sooner.

Ernest F. Acheson died on January 2, 2011, sixty-five years to the day that he was discharged from the Army after serving in the Pacific during WWII.

In the four weeks prior to his death, my father lived under the care of five different institutions in two states. Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life. Each facility admitted its failure to address my father’s needs by moving him on; each transition increased his stress and suffering. It was torture for me and my sister to watch.

What this experience illustrates to me is our society’s profound reluctance to deal humanely with dying – a process that, whether swift and violent or slow and painful – is guaranteed to await us all. I am reminded of a remark I heard at some point during this difficutl time, “In America, death is only an option.”

Our family is grateful to everyone who saw my father as a person worth helping to live in dignity until he died, despite his obvious impairments. Each patient is a person, beloved by friends and relations, who deserves to receive all the respect and thoughtful care each one of us will want when our time comes.

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  • Krystall Hilton

    I was the sole caregiver for both my parents and have had severe anxiety
    and depression since they passed away. I
    have had so many physical symptoms including mental confusion; thinking I was having a heart attack; headaches;pain and muscle spasms in my
    back, neck, shoulders, chest and arms;indigestion including almost constant
    burping, insomnia, and more. My
    doctor recognized the symptoms and prescribed Xanax and Lexapro plus lots of
    prayer and exercise. I have read
    in these medicines have side effects so it must be
    prescribed by a doctor. It rarely
    goes completely away, and my whole life is affected by it, but I manage to do
    the things that have to be done daily.

  • Krystall Hilton

    I was the sole caregiver for both my parents and have had severe anxiety
    and depression since they passed away. I
    have had so many physical symptoms including mental confusion; thinking I was having a heart attack; headaches;pain and muscle spasms in my
    back, neck, shoulders, chest and arms;indigestion including almost constant
    burping, insomnia, and more. My
    doctor recognized the symptoms and prescribed Xanax and Lexapro plus lots of
    prayer and exercise. I have read
    in these medicines have side effects so it must be
    prescribed by a doctor. It rarely
    goes completely away, and my whole life is affected by it, but I manage to do
    the things that have to be done daily.

  • Jared Hughes

    Please let me share the text of one of our blog posts on medicare reimbursement and the medical industrial complex in thei country:In 2002, an elderly client of Compassion & Choices, Margaret Furlong, went to the
    hospital armed with her advance directive, clearly stating she did not want
    elaborate, life-extending treatment.
    The hospital delivered those treatments anyway. She spent ten miserable days
    in the ICU, tethered to machines and tubes and pleading for it all to stop.
    Finally it did, and Margaret died. Then the hospital billed Medicare for all her
    unwanted treatment and Medicare paid – without objection, with our taxpayer
    Margaret’s story is far too common. At Compassion &
    Choices we intend to put teeth into advance
    directives, and we need your help.
    It is well documented that although advance directives are offered and
    included in the medical chart – as the law requires – in the end they are
    usually ignored. The pattern is cruel and absurd, and even the medical
    profession is starting to understand that. Last year the Archives of Internal Medicine reported, “Persons
    dying in the hospital often receive burdensome care immediately before death
    that may not match patient preferences.”
    Aggressive medical interventions in the setting of terminal illness do not
    prolong life, but they do increase the suffering of patients and their loved
    ones. Sadly, Medicare, Medicaid and private insurance carriers incentivize
    healthcare providers by paying for unnecessary and unwanted treatments.
    This could end if public and private health payers required, as a condition
    of payment, that treatment in the weeks prior to death conform to the patient’s
    advance directive.
    Here is one way you can help. Tell us if
    you know of a situation where a doctor or hospital disregarded a person’s
    explicit instructions or the instructions of a surrogate decision-maker. Your stories will help
    drive that point home with health insurers, hospitals, and health care
    As soon as providers realize the costly, unnecessary and painful procedures,
    tests and treatments they contemplate for a dying patient may be at their own
    expense, advance directives will acquire unprecedented power and
    authority. When providers choose treatment based on what patients want, we will
    have achieved real progress in shielding people near the end of life from the
    type of suffering Margaret Furlong endured.

  • Joanne Lynn, MD

    It would be possible to provide continuous anesthesia to the hip, rather than surgery, yet I know of no provider willing to do this for an elderly person with dementia for whom a hip fracture is likely to be the start of a rapidly worsening course that ends in death.  It seems that this would be a much more humane approach and probably a less expensive one, even if it required continuous attendance to keep the person from trying to get up and walk.  There is something odd about doing a major surgery “for symptom control” in this situation. 

     But who will do the research to work this out?  Not the National Institute on Aging.  Not a drug and device manufacturer.  Part of why we do not know alternatives to costly interventions is that we simply do not support their development. 

     Let’s take that to the politicians this election season!  I am a geriatrician, hospice physician, and now lead a non-profit endeavor to make it safe to grow old.  There is so much more we could be doing, and it would cost less and serve us better!

  • Sue Baker

    appalling but real – the same conditions exist in Canada. advances in health care have successfully provided life extension.  unfortunately we will all pay the price socially for life extension through the marginalization and ghettoisation of our elderly

  • Doc Weighs In

    There recently has been lot of attention being paid to safety concerns related to transitions of care from one institution to another.  Mostly, the focus is on preventing avoidable readmissions – often because it is thought this will save money.  The very sad and stressful story you tell about your dad’s many care transitions at the end of life raise another serious issue with our fragmented, broken health care non-system:  transitions – just plain too many of them to be good for the patient or his family and friends.  I am sorry your dad had to go through this but happy that, in the end, he found compassionate care in hospice.

  • Chrisann Middleton

    My heart goes out to the patient and his family. Thank God he finaly made it to Hospice.As a Hospice worker, I have total faith in its beliefs, and traditions. God Bless all of them

  • JSLE

    We had a very similar situation this summer with my Dad – he was 85 and a dementia patient, and he fell and broke his hip.  There did not seem to be any alternative to surgery, and he came out much more confused than before.  Could not understand why he was in this place and why they wouldn’t let him stand up.  When my mom was with him he had an anchor, but she could not be there all the time and he became more and more depressed and occasionally psychotic.  I have to say, though, that the support we got at the hospital and the rehabs was great.  We thought he’d be coming home to full time care, but then he got a nasty infection and in a few days it was clear that hospice was the next step.  When a dementia patient has an accident, it is incredibly hard to manage the post-op and rehab.  In our case we felt that the professionals were doing it mostly right, but it was still hugely stressful for him every minute due to the confusion of the Alzheimers.  There was very little we could do to help – every time we explained the situation, he forgot again. 

  • Meb01450

    As an only child, I experienced the same type of events, alone.  My dad had suffered a couple of mild strokes and had a third which totally changed his demeanor.  He became combative and refused his medications (for Parkinson’s), and eventually refused nourishment. 
    Although my mother is still alive and very much involved, it was me that made the trips to and from the various Boston institutions, tried communicating with doctors and staff that never had much to offer, and no answers as how to make my dad more comfortable within the last few weeks of his life. 
    Initially, he was bounced from a local hospital, to a Boston hospital twice, to a nursing home and finally to the psychiatric ward of yet another local hospital where he grew more confused, confined and paranoid.  Frustrated with the vague information I was given, I yielded to my cousin who is in healthcare to see if her questions and answers were any different than mine… they were not. 
    My understanding was that he was in the psychiatric ward for a geri-psych evaluation, which really never took place.  Totally frustrated, we did what we could to be physically present at his bedside and now wish I had the forethought of hospice care for my dads final weeks. 
    I can only hope that he felt our presence and that we did what we could for him before he passed away. 
    Not so sure the healthcare industry is in ‘it’ for the patient, but to satisfy the retraints the healthcare system, itself, has put on family advocates, hospitals, rehabilitation centers, nursing homes and extended care facilities.

  • Alicia Andrews

    my mother inlaw is in a similar spot of her life. she had strokes in the summer and the hospital practically pushed her out the door when it was determined that she needed rehab. a rushed decision was made and we were angry at the forced pace.
    she is in her last stage of life at a local nursing home. your story is now familiar to me, although we encountered doctors and social workers who understood care and comfort for the code talk it is.
    my overriding thought thru this process is that we are permitted to treat our pets with more humane treatment than we are permitted to treat our parents.. 

    • Pat Dolan

      Many people object to the comparison with pets, but I agree completely.  Especially when someone is in severe pain, the notion that it is ethical to prolong their suffering is a mystery to me. 

  • Joealbiani

    What a sad story and indictment of our medical system and fear of the inevitability of death. If they realized that death was an experience that happens IN life and not TO life they may be able to be more compassionate. How many decisions were based on the money that would be received rather than the obvious needs of the patient.

  • Facronin

    sarah, what a painful poignant story you have shared.  hard to believe what you and your sister expereicned during the last weeks of your father’s life is not an isloated case.  it seems to be more the norm especially given the way each of the care facilities knew better than you the options available to them.

    at least you could be with your father as he struggled with his confusion.this is a time of change. i cling to the hope that when courageous people like you step forward and tell your stories others will do the same. thank you