Medicine is slowly facing the issue of futile care

The voice on the phone is demanding, quavering, pleading; “Dr. deMaine you are going to be the attending critical care doctor when our mother is transferred to your hospital today. She needs to be taken off the respirator and allowed to die. We have been pleading with the doctors at the burn center, but they keep doing more procedures. We want her off life support as soon as she gets there.”

I am a bit taken aback since I’d never heard of the patient, let alone that I am destined to be her doctor in the ICU. I tell the family to try to come to the hospital to meet with us today when the patient arrives.

After hanging up the phone, I receive the call from the transfer coordinator, “We have a patient in the burn unit who is 87 years old. She has 50% third degree burns and 20% second degree burns. There have been multiple grafts. The complications have been pneumonia, stroke, heart failure and adult respiratory distress syndrome. The house staff will fill you in. They think she should stay there but the family is very unhappy that the patient is suffering through all these treatments.”

In thinking about this, I first reflect that it’s not too uncommon that the family feels left out in critical care decision making. They sometimes don’t understand that a sick relative may look awful, but still have a good chance of recovering. Lots of communication is needed, but the doctors often don’t have the best skills in this area. It can be very hard to switch from a “curative mindset” to a “palliative mindset” for all involved.

I’m paged to the ICU when she arrives by a life-support transfer Medic One team. This unfortunate woman has now been on life support for one month. There are multiple burn grafts in place. She is unresponsive to verbal or physical stimulus. The blood pressure is marginal, kidney function poor, liver functions elevated, and chest x-ray diffusely abnormal. If this were a young patient, there might be some hope but this woman is going progressively downhill. It’s a tough call. If the patient could talk to us, what would she want?

I meet with the family, the new RN team, and our social worker in the conference room. After introductions, I give them an outline of the process we’ll use over the next half hour to go over their Mom’s care. First we review all the medical facts and time-line of hospital care so far. Then I outline the options for further care including discontinuing care – and the benefits and burdens of each possibility. We discuss her daily life prior to the the fire. Her son and daughter, Jerome and Ada, describe her as a happy person yet very limited over the past few years due to arthritis. She was feeling isolated because all her contemporaries had died.

We then discuss her wishes for aggressive life support care. She has never signed a living will or executed a durable power of attorney for health care. Her husband is deceased, so under Washington State Law, the decision making authority rests with her two adult children who must agree. Both are adamant that Mom would never have wanted this kind of aggressive care. She has been ready to “pass on” for some time.

Jerome says, “It’s bad enough to die once in a fire, but dying every day in the ICU is just too much!”

After nearly an hour of discussion, which includes the nurses and social worker, all agree that the most reasonable course of action is to remove the ventilator. I ask the family to step out of the room. Then I turn off the monitors in the patient’s room, make sure the patient is still unconscious, turn off the ventilator and remove the endotracheal tube.

Jerome and Ada are at the bedside holding mom’s hands as she exits from this world. There are tears of both sadness and joy. The nurses and social worker continue to be supportive and help the family with the arrangements that need to be made.

Comment: About 70% of all deaths in American ICU’s occur by removing life support. Heroic attempts have been tried, but ultimately failed. Medicine is slowly facing the issue of futile and expensive care at the end of life – a time when patients, families and medical care givers often prolong care far beyond a reasonable limit.

The day after the patient’s death, I got a call from the surgical resident in the burn unit, wanting to know about the patient’s grafts and general status. I explained as gently as I could that we removed life support at the request of the family. The surgical resident wasn’t happy.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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  • http://www.facebook.com/profile.php?id=100001356842723 Henry Ehrlich

    What?  A doctor respected the wishes of a family to allow unconscious 87-year old woman with horrible burns to die over the judgement of a surgical resident?  The nerve.

  • Anonymous

    Wow.  A voice of reason and empathy.  I hope the family wasn’t bombarded by attorney’s phone calls.

    May mom rest in peace.

  • http://www.facebook.com/profile.php?id=655523194 Jeanine Satriano-Pisciotta

    I have been a long term care nurse for over 25 years, and have seen this many times over. I have had patients who didn’t want further chemo/ radiation to prolong their lives, but didn’t want to tell their own families that. Most of what happens is the patient tells us what they want and we try to explain to the families and some are in denial that their mom or dad can’t be “fixed”. Thank You for honoring the families wishes and what they thought was the right thing for their mother. I always honor what my patient wants whether or not I agree with it. It’s not my body and we should always remember that the patient comes first. and that includes allieviating needless suffering.

  • Anonymous

    Wow, I wish I ran into this problem. Whether it’s cultural or what, we have the opposite most of the time. If I never hear a family say they want “everything done” it’ll be too soon.

  • Katherine Levine

    Forty years ago, my first job was as a medical social worker on a neuro-surgical unit and a radiology unit.  I saw miracles and disasters.  I became an advocate of what I call Prolonging Life, Not Death.  Clearly the woman above was having her death prolonged.  As I started to write this, however, I  remembered a five year old on the neuro-surgical unit at the Mary Fletcher. She was curled in a fetal position, mewling most of the time and I prayed to whatever Gods there were to release her.  How wrong I was; she recovered enough to live an almost normal life.  Good lesson for me about how complicated some issues are. 

     I advocate End of Life Directives and counsel not prolonging death, but also realize that is generally difficult to decide.  In my mind the above case was prolonging death.  My personal fears as a 74 year old is having a stroke and not being able to communicate my wishes and fearful my sons and husband and any doctors caring for me won’t honor my End of Life wishes.  I think I have been clear enough that they will, but who knows.  

    I am hopeful for the medical profession as made the rest of the world far more enlightened on this matter.  Still, far too many have their death prolonged.  

    I will be linking to your post as one of my Downhill Slope posts on my blog.  Thank you Keven M.D. and  Jim Demaine.

  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    Where was the surgical residents attending physician?  The empathetic and humane approach provided by Dr DeMaine and his associates should have been addressed when this unfortunate woman arrived at the Burn unit.

  • Anonymous

    Sure, the ICU physician did the right thing, but it’s telling that his first reaction to the childrens’ request to allow their poor mother to die in peace sided with the opinion of the burn unit physicians:  “They (family members) sometimes don’t understand that a sick relative may look awful, but still have a good chance of recovering.”  Then, after examining this poor woman:  “It’s a tough call.”

    Not really surprised that families rarely bring up the subject of futile care, if even those physicians who are open to the discussion automatically assume any patient can be, would want to be, and maybe even should want to be, treated.

  • http://pulse.yahoo.com/_BEVHFIUYVNRNU6ZRTZBEV6BNEY Geri

    God bless you Dr. deMaine.   I hope if I am ever in a situation like this patient’s that my children and my physician are as wise as you, Jerome and Ada.  

    I recently heard about Five Wishes  ( http://fivewishes.org/ ) from a presentation by a Hospice representative at a civic group meeting.  I told my 80 year old mother about it, and she took the time to think through and document her wishes.

    I’m an only child and pretty sure I would have known what her wishes were, but having this will minimize second-guessing.

     It’s not easy to think about the end of our own lives, but putting our head in the sand about it is not helpful.

    I hope doctors and lawyers with elderly patients are using that as a tool too!   It’s less daunting somehow than some  health directives seem to be.

    .  

  • Anonymous

    I see this kind of thing every day.  A, for all intents and purposes, dead patient on a ventilator and the battle between  doctors as to whether or not the patient is viable.  The neurosurgeon says, “we’ll just have to wait and see,” the nephrologist and general surgeon explain that they can improve kidney and liver function.  The pulmonary intensive care physician decides to perform a bronchoscopy.  The staff just roll their eyes.  We’ve seen it all before… daily.  Doctors and surgeons giving families unrealistic sparks of hope, tugging at their hearts in their most desperate times.  We have a little joke in our unit about the doctors making these decisions with a travel or new car brochure in their back pocket.  It would be a joke if it weren’t true.  We’ve all witnessed it.  On that same note.  Perhaps when it comes to “health care reform” they should ask a bedside clinician their opinion.  Trust me, there would be much less suffering in the world… and a whole lot of physicians driving a Honda Accord.  

  • LorettaDowns

    Too slowly when stories like this one represent the final days of so many of us.  It is time that all of us, especially health care providers, are having conversations about end-of-life care long before we need it.  A recent PBS 10-minute clip showing such a discussion makes so much sense: http://video.pbs.org/video/2156589432kl

    It is time we view quality of death as an integral part of our quality of life.

  • Anonymous

    Practicing the art of medicine should focus on the ease of pain and suffering of the patient.  The alleviation of painful symptoms that might lead  to a cure should not be what drives the application of medical knowledge.  Treating the diseased, sickly and ill individual poses challenges with respect to the ability of the doctor to provide a cure and be a healer.  With advances in medical diagnoses, novel therapeutic protocols (stem cell therapy, tissue engineering) the physician can challenge the limits posed by human biology.  When healing is not achievable, the physician should know that the human patient can not be turned to into an experimental subject.  The line between the ethics of practicing curative medicine as taught in medical school and the admission that abuse, inhumane treatment to restore signs of health should be taught in medical schools as part of the exercise of the autonomy of the patient to undergo extraordinary measure that might severely damage his independence, decision making capacity and autonomy.  In other words palliative care should be part of a conversation between a physician and his patient who wishes to be respected and dignified at the end of his life.

  • http://www.facebook.com/people/Angelita-Desahagun/100002536133372 Angelita Desahagun

    For me, only God can take the life that He gives.If it happened to my loveone, I will fight for my loveones life. I am willing to give care and love that my loveone deserved.I will continue praying that God will have mercy on him, I will continue believing the wonder of science!!!!!!

  • http://www.facebook.com/people/Angelita-Desahagun/100002536133372 Angelita Desahagun

    For me , only God can take the life that He gives.I still believed in the wonder of science!!I  I will give the care and love to my love one no matter what.I will still pray that God will have mercy and whatever His will , let it be done!!!!!

  • http://www.facebook.com/people/William-Vandeveer/1200206901 William Vandeveer

    Doctors are
    in the business of living, it is a difficult decision to remove someone from
    life support, but at the family’s request it is often the best thing for the
    patient. I work in the ICU and have seen this situation come up several times.
    It is not difficult to relate to this situation because you have to understand
    that as humans we have only figured out how to prolong life, not cheat death.

    Angelita,

    You quote “only
    God can take the life that He gives.” Well in this situation did her end her
    life in the fire and brought back to life by humans, several questions remain,
    was God trying to end her life? Was God deciding that it was her time? Was it
    right for her fellow humans to bring her back? These are questions that are not
    easily answered. You express your love and care for a loved one, would your faith
    be questioned if that loved one was in constant pain due to burns, or pain from
    advanced cancer.  

    My question
    is do you believe in Comfort Care?

  • http://www.facebook.com/profile.php?id=100000187617045 Sandra Henry

    Have you talked to your family members about your wishes?  Do you have a advance directive? Living will?  Have you appointed a health care proxy or Durable power of attorney?  Most people will say no but their family’s know what they want.  I have seen those same families fight over the patient in the hospital.  Old hurts and problems in the family resurface.  Sons with power of attorney not following mother’s wishes because his sister has accused him of murder.  It gets ugly.  Real fast.  Those same families hold everyone hostage while they slug it out.  Please talk to your families NOW and be clear that the DPOA is acting on YOUR wishes.  It is your time to say how you want to die.  Be Selfish.  Think of yourself.  And for God’s sake mend those bridges while you can.

  • Anonymous

    Kudos to the Critical Care doctor who evaluated the situation, included the family in care planning, and then followed their wishes. And shame on the doctors at the Burn Center. Clearly they were less interested quality of life and more interested in their outcomes statistics. An 87 year old with burns of that severity complicated by pneumonia, stroke, respiratory and renal failure has no quality of life left. The children have grounds to sue the first hospital for assault for continuing aggressive care after they repeatedly asked them to withdraw support.

  • Anonymous

    This isn’t just a question of simple humanity; allowing a person to die with dignity when the end is imminent.  Spending a lot of money for care that the patient and his or her family doesn’t even want is the ultimate form of waste in medical expense spending.  What is the opportunity cost of this?  How many preventive measures could we have provided for some of the healthy but uninsured 46 million Americans that was squandered here and in many other such instances that occur every day?

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