“I just want to be clear who has the final say on life support”


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51 comments

  1. Cathy Turner

    Wow! So appreciate the honesty and pain from the author.

  2. Elizabeth Hopkins

    I was kept alive by surgery I wasn’t properly told about after my bowel ruptured and I walked around for days this way. My intestines have been glued together for the past four years. I’ve wanted to die that whole time. I am suffering. Sometimes dying is a release.

    • Doreen Rockliff

      I too suffered a non-diagnosed perforated colon which was not recognized until I went into septic shock. Surgery and life support in ICU kept me alive. It appeared from my medical notes that I had given permission for these procedures. I had no knowledge of consenting. For the first few years I wished they had not saved me, it would have been an easy way to die. I would have known nothing about it.
      Now seven years on I have recovered a measure of quality of life, but I have had to work very hard both physically and mentally. My wonderful family doctor saw that I got psychological counselling because of suicidal feelings and a health sponsored program was available for physical recovery.
      I have got to see my grandchildren grow up; played tennis again; started travelling again; and now I volunteer on the ICU where I was a patient.
      My wish for Elizabeth is that she may take hope from this.

  3. Karen

    I have witnessed this many times as an RN. Not sure what the answer is but sometimes family just need permission to let go. How we achieve that is the challenge.

  4. Cynthia

    This is so powerful. We often get caught up with our own jargon about advanced directives, power of attorney…Level 3/4 that we miss connecting with the most important question. This is a wake up call.

  5. Janet

    Thank you for this! Looking out at that too common trauma through the distressed doctors eyes. It’s a new lens on an old conversation. Shedding new light.

  6. camelia Irimie

    Congratulations for such an eloquent and insightful article on a very delicate subject!

  7. Luminita Carmen Aldea

    so powerful and honest, and so sad to witness human body degradation…thank you for being so real

  8. Stuart d jones

    I love your writeing…. our 10 month daughter was put on the highest form of life support… ECMO. Bec her heart and lungs went bad after a stay in hosp.. and for 28 days we watch her little body fight .. but in the end we lost her… and it went down just like u wrote..thank u for writeing this I think family’s needed to know the dirty truth about this pain…. thank u stuart d Jones..daddy of londyn rae jones

  9. Fred Ryan

    Very well-put. Reminds me of reflections in “Being Mortal” by American surgeon Atul Gawande. On one of several points, this piece is exceptional in that it shows us end-of-life considerations from the medical side and this is re-assuring. We want our health-care, essential people to know and feel the difference between quantity and quality of life in the last days. Thanks.

  10. Gail MacKean

    This is a beautifully articulated piece of writing from a clearly very human physician. Thank you for this Vlad. I hope you maintain this humanity throughout your career, and that our healthcare system evolves to the point where it supports you to continue to be like this. I write this note as a parent of a now young man born with complex medical problems.

  11. Susan Greenfield

    Thank you for this honest reflection of the thoughts and feelings that are so hard to put into words.

  12. Gerard Ryan

    Thank you for sharing. Simply , the individual who is dying and the Dr who is as honest as you are here will allow life to end with dignity.
    No one, not family , church or state should have any say if it’s my express wish while I am healthy.

  13. Paul Anderson

    I appreciate your respectful and heartfelt reflection on what the terminal phase of an illness means for the patient, the family or other caregivers, and the physician. All parties, including the physician, may well be experiencing extreme emotional stress. This highlights, among other things, the need for all parties to have access to psychological/psychiatric support.

    You mentioned the use of sanitized language, suggesting that this does not serve the patient well. I agree completely. There is far too much use of sanitized language in medicine. With sensitivity, explanations should be given in a direct and specific manner. When people do not feel properly informed, it adds to anxiety and fosters mistrust.

    There is no easy way to navigate the emotional territory of respectful disagreement in end of life scenarios. It should be expected that all parties will to some extent experience substantial emotional trauma, and support must be made available.

    It must be very difficult for a physician to hear a patient or their POA state their option for that which, in the physician’s estimation, will result in unnecessary suffering. Still, one must respect the decision a person makes in regard to their own life. The best you can do is to provide a full and clear explanation of the options, and offer your professional opinion. There should be a way for a conscientiously objecting physician to refer a patient on to a colleague in such cases.

    Not to be overlooked is the fact that, on occasion, even expert prognosis turns out to be incorrect. I have witnessed quite a few cases of this, in fact.

    In one instance, a patient for whom I was acting as POA was on life support in the ICU and the prognosis was very grim. The physicians urged me for many days to override the patient’s stated wishes in regard to intervention and sign a DNR order. We were told that she would not regain consciousness. She did. We were told that she would never again breathe on her own but would remain ventilator dependent if she lived, that she had terrible pneumonia and should be allowed to die rather than continue to suffer. It turned out that there was no pneumonia, and she was breathing on her own 10 days later. We were told that she would never be able to return to her home, but would henceforth require institutional care. Six months after her admission, she walked out of the hospital and, after a transitional period living with family members, resumed living in her own home independently.

    To her physicians, it seemed abundantly evident that this lady was dying, and that she should be allowed to go peacefully. They had sound reasons to view aggressive intervention as inappropriate, pointless, even perhaps inhumane, and yet they were mistaken.

  14. Sherry

    Please help us in the ICU(intensive care unit) our intensivists (specialists in ICU medicine) ICU nurses, Respiratory Therapists, physio, pharmacy, social workers , dieticians ward clerks and environmental services. We are a team, a family of unique specialist we see you in crisis, on the worst day of your lives. We’ve never met before, but you’ve met many other healthcare workers along your journey, you are scared you don’t want your loved one to die. We have machines, dialysis, defibrillators, CPR , ventilators, tubes wires and medications to support your blood pressure. We want to offer you these treatments but only if there is a chance you will recover and have a quality of life after. We don’t do this job to hurt and cause suffering we want to help you. It destroys us when we are forced to offer and continue treatments that will have no positive outcomes except suffering. Suffering at end of life for your loved one and for your whole family. Help us by talking about what your values are what is important to you. What disability you are ok living with. No one can know the answer to these questions except you and if you have helped loved ones understand. It’s not like the movies trust me !

    • Donna

      Where is your Board Certified Chaplain?

  15. Cheryl

    I appreciate the doctor’s compassion for patients and families at such a difficult time.
    My mother had cancer and Do Not Resuscitate papers which were given to the hospital for her when the decision needed to be made. She had discussed this with my brothers and I all ahead of time. My children all know my and my husband’s wishes and what to do if needed. It’s a huge help to not have to decide. No pain for her made me feel better.
    It’s a kind thing to discuss with your children. If you don’t know, maybe talk it over with your husband, wife, friend, children or leader from religious or non-religious group.

  16. Karin

    Thanks for articulating this experience from a physicians point of view. We need more conversations around the life support topic before we are in crisis mode with a loved one. Our family went through this when faced with the life support decion for our dying mother. What made it easier was she herself gave the hospital staff instructions not to initiate life support. What made it harder was her 90 year old senile husband had power of attorney and he overturned her wishes when our mom was unconscious. In the end she was only on life support for a day, and had no vital signs once the machines were disconnected. The husband, our stepfather, was satisfied in his mind that he had ‘tried to save her’. As her daughter I felt she was betrayed; my feeling was they had forced my mother to die twice, and forced us to watch her die twice. Now, years later, I’m still sad that we were not able to honour our mother’s wishes and that even in the act of dying she was owned by her husband. I offer this account to other readers in the hope that it will help them sort through some issues and questions before a time of crisis. Each caregiver needs to really ask themselves if they are acting on behalf of the loved one or meeting their own emotional needs by prolonging life through artificial means.

  17. Vicki

    I wish people had to take a workshop on the role of the substitute decision maker before they start “calling the shots” for the person that named them. Only one voice matters, and that is of the patient/LTC residents. I see far too many families doing things because “I don’t want this for her.” But…what does SHE want? You need to know this stuff and speak for her.

  18. Christine

    SO well written. This captures so well the many heartbreaking conversations I have had through residency and now as an emergency physician.

  19. Jenn Tsun

    good for you Vlad. it seems more people need to hear this. death is inevitable. death is the master. yet the other side is not so far away.

  20. carmen

    Bravo Vlad! Scris cu compasiune si intelegere,sper ca oamenii sa rezoneze cu tine,si cu noi.

  21. Ibi

    There is a place to be alone! Getting out of the way and letting things happen is sometimes the very best thing we can do.
    Love your writing Vlad!

  22. Jill

    This was a moving and accurate description of a health care provider in today’s healthcare climate. As an Oncology nurse and former hospice nurse, I encounter the same challenges, frustration and sadness, sometimes on a weekly basis. Often we internalize these moments because our society is repulsed by the idea of death and mortality. We are unprepared for the certain fact that one day we must all die. Thank you for sharing your story. It takes courage and provides much needed validation to those of us who fight daily to advocate for a persons right to dignity, quality and peace at the end of their life.

  23. Darlene

    Excellent article and chillingly accurate, both as the daughter who was making decisions and a nurse who provided some hospice care to patients some days weeks or hours before death -too late due the decisions of loved ones to “ give back” to their loved ones and not” give up”.
    My time working in the hospital has shown me that there ARE THINGS WORSE THAN DEATH! Your article is is an example of some of those. Hospice is care and peace before death, could add quality since it’s inevitable quantity will not happen.

  24. Sue Yuroski

    This is a huge reason ever person should have an Advance Directive stating how they want their end of life treatment handled. I understand the sister’s grief and desire to prolong the patient’s time, but I also know the doctor is corrrct. What is coining is inevitable and terrible. I wish the idea of death weren’t so terrifying as it is to so many people. It happens to everyone who lives and should be recognized as a part of living, not as something to try to stop. I know it varies tremendously when it happens, but being able to leave this world gracefully and in a state of grace is so much less traumatic for all involved

  25. Joanne and Brian Hough

    Very informative. Reflecting on this and discussing this with loved ones ahead of time is so important.
    very perceptive doctor! Thank you!

  26. Nana Streby

    The hospice nurse who explained this to my dying mother did a remarkably compassionate job of describing a horrible scenario. (I hadn’t been able to get through to her.) Mom looked at her and at me and stated, “That would be hard for my family to watch.” She signed the DNR.

  27. sage banks

    This is one of the best descriptions of end-of-life scenarios and the rituals of resuscitation that I have heard in a long time.

  28. Martin Gwasira

    I watched many of similar situation while in chaplain Residency (CPE). I wrecked my heart as I witnessed patients dwindling, but family still holding on to the littlest hope. Witnessed it in the ED, PICU and adult icu. Patients and families need to prepare for such situations by decision on what care can be rendered and when to end heroic measures.

  29. elizabeth Pennington

    I am in my 10th year of chemotherapy and options are dwindling. All I ask is that my wish to leave this life without the misery of any of these extremes.

  30. Annie

    My great aunt was 93 when she had a heart attack. She was resusitated returned to her nursing home in a much more dependent state. She was furious she had been resusitated but would not sign a future dnr. So I listened to her sadness and frustration for two more years until she died.

  31. Yessenia Escano

    I’m touched and humbled by how you honor your patients, their families while preserving yourself at the same time. You’re the ICU Patient Whisperer! Thank You!

  32. Starla

    Very powerful article. Thank you for verbalizing your feelings, thoughts and emotions Dr. Dragan. Sometimes it is forgotten how truly difficult and painful it can be to put aside our emotions when we are caring for our patients.

  33. Maryann, RN

    We need to make it ok under certain limited circumstances and under very strict criteria for the best practice to be to do nothing.
    We can help patients accept that sometimes nothing is the best care. If we speak honestly to them throughout the process. Every person on the care team has to be able to do this. We need to train our care givers in how to talk to people about dying.
    Cpr was not designed to be used by persons actively dying From a disease process. It should not be offered for that. Change the rules so lawsuits don’t result when cpr is not done.

    • Kim

      200% agreed!
      Our culture needs to change our non-acceptance of dying and death.
      As nurses, this is a great idea to advocate for our dying patients. Glad that this forum is available to start the conversation.

  34. Kathy Arnold

    Well said and with love of humanity and your profession so thank you for the understanding ✝️❤️

  35. Kim

    As a nurse who has seen this too, my heart breaks reading this. It is so hard to health teach dying and death to families who unrealistically hope and hold out for a last minute miracle that just doesn’t, and will never, happen. I will continue to educate myself, and learn new evidenced-based ways for nurses to do whatever we can to support the palliative patient and their family. It is my hope that the typical North American stigma and avoidance of dying and death is challenged and changed.

  36. BJ

    So eloquently put. This is a discussion we should all have with our families before it becomes a must have conversation.

  37. Faiza Abbasi

    Aah how cruel a picture drawn here,how accurate, how true!!!
    I bet if u SAY each step of resuscitation instead of usin the word,no one will ever ask for it! I wish no weak human body(terminal illness , physical weak)has to put through it ever. Worst day n moment it was when I saw my daughter been resuscitated n wheeled into picu,wish I had read beforexxx

  38. Sheila Allison

    A powerful article but fails to use the opportunity to refer to the importantance of having a Representation Agreement/Advance Directive or Living will. Mine clearly identifies my daughter as my substitute decision maker and we have had the hard conversations that lead to her total understanding of my wishes. When my husband died the ER doctor said ICU or Palliative Care? I handed him a copy of his representation agreement and said “Palliative Care”. He died peacefully a few days later with his loved ones around him. No tube. Comfort meds only. No pain.

  39. Heidi

    My husband says a DNR feels differently from the standing point of still Being in good health… when the inevitable is very far away. But as we move forward in aging…there is no way out of this. He cherishes every moment longer to Breathe…
    I was an RN for decades and saw and did many things in our modern medicine. I know of what Dr Dragan speaks. I often feel that we had more dignity, grace, respect and resilience to the cycle of Life 100 years ago. Thank you Hospice for providing comforts. I pray and speak to my family… Let me go. But, there is always one …. or two…. family members that will want me to breathe a little longer. Please Hospice… when it is Time, Let me go. Compassionate Caring….

  40. Denise Sauer

    so Impressive. This is a discussion that needs to happen now. Personally I have an advanced health directive that states that i believe that quality of life is more important than quantity and that i want help out of here if I am in pain and not likely to get better.
    This sounds good but it didn’t help my husband who developed fronto temporal dementia after surgery. His AHD was ignored as he “might have changed his mind”. How arrogant is that….. This should not be left to politicians. We need a Voluntary Assisted Dying Law.

  41. Mireille

    This is such an accurate description of a daily issue we encounter as health care providers in those departments. As an ICU registered nurse and a former oncology nurse, I’m quite familiar with these situations.

    My aim, our aim may I say, as caregivers is to promote life in every situation… and to relieve pain. But we also know that life has an end, which definitely seems to be forgotten by some.

    For sure, physicians can clarify goals of care and resuscitation status, but everyone knows how uneasy it can be when we cannot reach any consensus with the patient or their relatives. And so often, it appears the patient has not expressed any advance directives. In those situations, it’s heartbreaking to start your shift just hoping the worst will not happen while you are on duty. Providing care knowing full well that it will not bring any relief or hope of recovery, makes us face the cruel truth of what the evolution of medicine has brought up: new ethical issues. Can we truly blame the health care system? Partly, certainly. But it seems to me, not only.

    Furthermore, by deferring death more and more, prolonging life with technological means, successfully fighting against acute diseases and conditions, we are used performing life support treatments. And until a collective decision rules on patient’s resuscitation status, we are bound by our commitment: we will perform our treatments. As violent as they are and even though we are acting against our values, we will perform them. “You and your family can make me do this to you”. Appalling truth of a terrible choice that seems to be given to the attorneys, who, so often, misunderstand the ins and outs of their “apparently unlimited power”.

    Thank you for sharing this worrying topic. May we find the words that will help the patients in these situations to be handled with all the dignity that they deserve as human beings.

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