‘Morphine is no substitute for the truth’: Doctors must be honest about progressive illness


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97 comments

  1. Cathy Faulds

    I want to thank you for such a thoughtful article about what I refer to as “ the elephant in the room” regarding end of life care. As physicians in our system we have the ability to work collaboratively and seamlessly to integrate end of life care and goal setting earlier in the Disease trajectory.
    My experience mirrors yours but after 31 years I see it getting worse not better. Our society is death averse. As physicians we offer acute treatments because we can and because many patients expect it. I find it interesting that the physicians almost always choose a palliative approach to care earlier for themselves and their families.
    Keep doing what you are doing. I have practiced long enough to know that this current approach is not sustainable and will change.

  2. Denise marshall

    Well said! Doctors, as a subgroup of society are every bit as much at risk as anyone else, to be “dying avoidant” whether consciously or unconsciously. Re-normalizing death dying loss and bereavement as universal aspects of being human (as a collective societal mandate) is the way forward to ensure our future citizens (and those who become healthcare providers) approach this consciously and kindly.

  3. Susan Lester

    This important opinion piece is the perfect segue, solution perhaps, to the moving article written by Paul Adams. July 5th, 2017.

  4. Lisa Alagha

    What are great article. Avoidance of truth only leads to confusion and disappointment. There is a time for hope but it must not be given blindly. As a family member or friend of someone with a progressive illness, this perspective has assisted me in moving through the process and acceptance of the death. I look forward to more articles on this subject.

  5. Kari

    Thank you for speaking such truth about such a difficult topic. It really portrays the importance of being able to focus more heavily on the quality of the patients time left on the planet. Living with false hope and running from treatment to treatment does not prevent the inevitable and in so many cases just drains and ruins the precious time the patient has left. Instead they could be spending their time learning acceptance while creating and cherishing many moments of connection, love, joy and fun with loved ones. Patients deserve the truth, however hard it is, they should be offered a whole-lot of emotional treatment instead of or, in conjunction with chemotherapy etc. If doctors don’t want to be blamed then they need to be honest yet gentle and very effective in getting the hard message across to their terminally ill patients. No one ever said being a doctor is easy. We must all remember that we are not just a body…we are in fact a Mind, Body, Spirit and Soul! Primary care physician’s need to get on the band wagon and starting treating and caring for their patient’s as a WHOLE! Here’s to cultivating!

    • Rand

      “Instead they could be spending their time learning acceptance while creating and cherishing many moments of connection, love, joy and fun with loved ones.”

      Thanks to the all knowing uncaring College of Physicians and Surgeons and their senseless war on pain patients this can’t happen for patients. Roy Green is right when he said on the air a month ago “If you live in BC I feel sorry for you because of the College of Physicians and surgeons interfering in the doctor patient relationship by threatening to sue GP’s if they don’t cut back or curtail their prescribing of opiates”.

      I recall that when the Colleges first sent these threatening letters to every GP in BC, a month later the news was full of the stories of increasing overdoses. This is SO simple to make the connection. In my opinion the Prescription Review Board of CPSBC is responsible for thousands of patients having to now go to the unfamiliar streets seeking pain killers. So I challenge any of the medical professionals who read this to prove I’m wrong. Pain patients not only have to fight for their lives but now have to fight the medical system in Canada. This is total madness.

      I am one of the pain patients in BC who has had their lives ruined by these clowns at the College. Ask Roy, he knows me. Here is a note he sent me yesterday:
      “What is happening to chronic pain patients is outrageous Rand. And that’s putting it mildly.
      Human Rights Watch in the U.S. is reviewing what patients are forced to endure. That’s a positive.It’s absolutely cruel that you must suffer as you are.

      Roy”
      Roy Green
      The Roy Green Show
      http://www.roygreenshow.com
      Syndicated on the Corus Radio network
      Corus Entertainment Inc. | corusent.com
      _________________________

      A note to the College: Roy mentioned that he has heard that the College is going to be sued. Yes he said that on the air. I would like to see a class action suit against the College for ethics violations because I personally don’t believe they have any legal, ethical or moral right to threaten GP’s into not caring for their patients the way they see fit. I don’t see the College publicly challenging doctors who give out benzos like candy and then can’t get their patients of them. No, pain patients are easy targets for the corrupt College and their politically motivated agendas.

      These are my opinions.

  6. andreas laupacis

    Fully agree with the sentiments expressed here, but predicting disease progression for some diseases (eg heart failure) for an individual patient is maybe not quite as straightforward as is suggested.

    • Kieran Quinn

      I completely agree. The most robust prognostic scores (of which their are many) for HF are at best 80% accurate in predicting death. When death is the outcome, are we willing to accept a 20% margin of error?

    • Ellie

      It is true that chronic diseases such as heart failure, COPD, etc. do not have straight forward disease trajectories and prognosticating is challenging at best, but this shouldn’t become a form of inadvertent avoidance of having open conversations along the care journey with patients and families. Even without a clear prognosis it is still crucial to ‘walk two roads’ with patients. It is always possible to hope for the best from treatments, but clinicians simultaneously remind patients that the condition is likely to change, have many twists and turns, and the clinician can offer the patient and family reassurance that they can talk openly together about the forest and the trees of their illness. Without exactly ‘knowing’ the clinician can and should still learn how to prepare patients and families for the possibilities, the ‘what-ifs’, plan B, etc. Most chronic illnesses don’t stay ‘stable chronic’ forever, at some point there will be a tipping point and a crisis is the worst time to start these discussions. Leaving these discussions for the palliative care clinicians to have with patients and families is too late and doesn’t respect the relationship most patients have had with their disease specialist and family physician. If I were in this situation, I would like to have these conversations with the physician I know best, be prepared and not surprised if the worst happens, have a sense of what to expect, and not to have to wait for a palliative care doctor to join my care team at the end of life to have honest dialogue.

  7. Hsien seow

    Thank you for writing on this topic. Like you point out, it isn’t about telling people they will die earlier, it more about preparing for the dying process earlier. It is complicated and can be very long—and exhausting for caregivers and families. We need to be prepared. And have more “truth telling” to make informed decisions.

  8. Cathy Risdon

    A few years ago, I was part of a first year communication skills/self awareness course for medical students that involved a guided meditation on how they would imagine their own “good death”. There was palpable backlash. “How dare you make me think about death?”. “I am a young person, my death has nothing to do with becoming a doctor”. Hmmm.

    The themes of death aversion in your cogent and thoughtful essay – and in these comments – are spot on. Thank you for this contribution to the discourse that values compassionate honesty and truth-telling as a essential resource for the most challenging moments of our life’s journeys.

  9. John Zanini

    Great article Samantha! As individuals we would hope for the truth and not avoidance. I think in general, knowing and having the ability to prepare for the dying process earlier (which can be long and complicated) offers the individual and their families the precious time to plan and complete was has not been completed.

  10. Julia von Flotow

    “We must think about death. This thought alone lets us know ourselves….and the effect of thinking about death is marvelous, as it destroys everything according to its nature, preserves and maintains those who think about it, and defends them from all human emotions.” Michelangelo

  11. Paula Baruch

    What an important issue! Why are we so frightened of dealing with the inevitable…our own death? I realize that having a positive attitude towards healing from a devastating illness is vital…but when the path is overwhelmingly headed to certain death – and soon! – it is important to have the time to process this.

  12. Kathee Rose

    Really resonated with your words today. Thank you for putting these thoughts and feelings together so eloquently in your article. This validation has helped me get through yet another challenging day doing palliative care work.

  13. Ron Duda

    The article is very reflective of my family’s experience prior to the passing of my father last summer. Sometimes doctors work in a bit of a vacuum, treating systems and not people.

  14. Andrea Levy

    Amazing article Doctor Winemaker! I have always thought that to choose this specialty made you and others like you incredibly special people. Knowing you personally, I know this to be true and this article is one that I hope never to need in our future but thank you for giving us the nomenclature to ask what we need to know should that, god forbid, ever happen.

  15. Karen Barlow

    My mother died this past December. Your article could not be more timely. At 102, we were very aware that Mom was dying of simply “old age.” She was a resident in assisted living for 20 months. Consistently, we discussed with staff the fact that we wanted her to be comfortable and safe. Consistently, staff responded that she was doing well, no issues. Her physician said, “Mom, is good.” I respect this doctor and my mother adored him. When I discussed my concerns with him over the last weeks, he agreed that Mom required more care and needed to be kept a close eye on. I was so thankful and appreciate that he had acknowledged what I knew to be true in my heart. I am only saddened that she died before we could put into place the ending that I had envisioned for her final days.
    At 102 your job is done. When death is near at hand we should be ready and make the plans that make this part of the “ circle of life” a beautiful memory. We are saying a last farewell in a very personal way. To say goodbye is an extraordinary gift.
    My wise son said to me we are one of the only cultures that does not celebrate, embrace death – Mexico’s Day of the Dead, New Orleans Jazz Funeral, Ghana fantasy coffins.
    I am not saying it well. I do not refer to death as passing, ever. It is dying. We are all heading that way. That is a fact.
    Simply put, “ The truth will set you free.”
    Thank you, Samantha.

  16. Jeff

    Very important and well written article. If nothing else, patients are owed the truth, and so are their loved ones.

  17. Preeti

    Thank You for raising awareness to this important subject .As a family physician I
    encounter this “elephant” way too often.As much as I do not mind having this conversation myself with my patients ,I wish my colleagues in the hospital don’t shy away from it.

  18. Bob Sauls

    Samantha, you’ve written about a very important issue and gap. Just recently, I participated in a discussion with family members of patients who had died. The intent was to understand what they saw as their most important needs and how we could be doing better. As you can imagine there were a number of themes but, one of the strongest was that they wanted their health care providers to talk to them – to be honest while at the same sensitive and caring. They saw this as a big gap and, when it occurs, leads to poor experiences for them and their families. And, in response to the concern that people aren’t ready to hear, their answer was, “Just ask.”

  19. David lewis

    First of all…am I dying in this scenario?

    Second of all, this is a tough gig. I have seen a ton of docs lately. Everyone has their own specificity and the out put revolves around their spec role. I’m unclear as to wear the truth is supposed to come from. Diagnosis is challenging, timing is tough and who wants to be the asshole. Challenging.

    The country doctor from 100 years ago would tell you and the family the scoop. 20-50 years of ongoing care and consideration. How do we replace that? Tough gig. People are living longer. That has to be good. I have told Michelle that if I can not function like I would like…let me go. It’s a yikes but true. Who wants to be alive at 25%. Tough gig.

    Great to hear from you dude. Let’s Golf this year…if I live through the winter.

    • Valerie McDonald

      Yes, indeed! Which of the many, many doctors, nurses and caregivers should family members of terminally ill, complex patients speak to about the overall picture. Will my father-in-law die of his heart disease, prostate cancer, blood disorder or some random infection? Who will help me decide whether it is productive for him or for our society to spend a whole day with him in the Emergency department of a very busy hospital to investigate his feeling of “weakness”? Who should I approach to encourage him to have the conversation about how he might best manage his remaining days? weeks? months? years?

  20. Melissa Chadwick

    I love “morphine isn’t a reasonable substitute for truth telling “, your title is so very “real” and poignant. Very well written and very honest Dr. Winemaker.

  21. Michael Dunbar

    Great piece Sam. I am of the same opinion. It takes courage to tell the truth in the face of dire outcomes, but death is inevitable and the courtesy of truthfulness around the inevitable is requisite for the best possible death, which we all deserve.

  22. Maureen Taylor

    Great job, Samantha! I’ve written before about my own experience with my husband’s terminal brain cancer. While we received excellent “care” from his oncology team (medical and radiation), we asked them point-blank why Don should go through chemo and radiation when the evidence showed they hardly extended survival more than a few weeks. It was amazing how uncomfortable they became when we tried to just talk about the death part of the journey. It was only Don’s palliative care doctor who sat down and listened to his fears and concerns about his suffering at the end, who explained how he’d try to reduce that suffering if he could, who agreed that chemo and radiation had been a waste of time and energy. We were so grateful to him for those conversations. So while I agree this should be part of every physician’s comfort zone, I’d love to hear in particular from oncologists — do you think your colleagues find it difficult to admit to patients that many cancers can’t be treated at some point? Is death always a fail in your world?

  23. Pauli

    Your realistic picture and amazing sensitivity are much needed in the healthcare arena. How kind and compassionate you are in your honesty. In the “Hippocratic Oath” it is said to do no harm ….. Often harm is done by lack of truthfulness ……. Why is that?
    Thank you for the eye opening article.

  24. Jennifer Fazakerley-Row

    Thank you for highlighting this. An honest approach to prognosis, trajectory, and expected progression not only makes a difference to the patients, but also to their families and loved ones. “Serious illness conversations” can be a gift to patients and families, ensuring that the time they have left is spent on the important things to them, rather than chasing a treatment and possible side effects with little benefit. Final months can be spent making memories with family, or sitting in waiting rooms or hospital beds chasing an elusive “cure”.

  25. Alisa Williams

    Well written, thought provoking, and eye opening!!! Thanks for sharing your thought so eloquently!

  26. Daniela Giannini

    Awesome article! So true! See it first hand daily as a Registered Nurse. This line of communication needs to be opened!

  27. Christina deLottinville

    Thanks for saying what I have been preaching for 38 years in healthcare and experiencing firsthand with dying family members.
    We are so more in tune with this whole conversation when our pets are dying and can assist the process.

  28. Darren Cargill

    Well done Sam. This is an excellent piece you have written.

    I sympathize with my colleagues who find discussions about death and dying difficult. But we are, after all, the medical experts and talking to patients and families, in a way they will understand and engage with, is part of our job. We should not underestimate our patients. Most of them know what is going on. They are simply waiting for someone willing to talk to them about it. Like you, I have struggled with meeting patients told to “go home and gather their strength” for the next round of chemo that we all know is not likely to happen. A younger version of myself used to get angry and upset about this. Now, I try more to understand my colleagues’ struggle with having these discussions and try to find ways to help them have better conversations with their patients. As physicians, we do so much more than just prescribe drugs and do surgery.

  29. Laura Mallia

    Beautifully written piece! Thank you for all that you do in our community. We are so fortunate to have you.

  30. Chris Leighton

    An Oncologist’s Perspective…It is hard to impossible to actively treat a cancer patient without offering some hope..whether that be hope for slowing the cancer, or relieving symptoms. Oncologists should consult palliative care doctors early in the diagnosis of advanced cancer, even while chemotherapy or radiotherapy is ongoing. This clearly improves communication and outcomes. Oncologists must be realistic about treatment goals..and most are in my experience. One final comment..people with advanced cancer often hold onto the hope of cure..even when told treatment is not curative. The power of denial reframes treatment goals to more desirable scenarios. I have practiced as an oncologist and palliative care physician..these are complementary roles whose success is improved by early collaboration.

  31. Anne

    Thanks Samantha… this dialogue extends beyond the realm of palliative care to almost any area of health care (and life)… honest and gentle, respectful conversations support the care of patients and allows them the time and space to make the important decisions regarding their journey. Anything less denies them the right and opportunity to quality of life (sometimes vs. quantity) decisions

  32. Drew Bednar, MDCM FRCS(C) FAAOS

    This is a terrific note well done and needed. I would hope it could be reproduced into CMAJ or Canadian Family Physician for their wide audiences.

    Sadly there is a similar issue in adult spine care which may be even worse as those patients have no end in sight.

  33. David Walker

    Thank you so much. I will share this with my medical students. Your words are in line with the writings of Atul Gawande (Being Mortal) and the sobering piece “How doctors die” by Ken Murray. We are, as a profession, more honest with ourselves, perhaps, than with our patients who interpret our solicitations and euphemisms as tangible hope and pursue harsh paths.

  34. Sharon Nettleton

    Thank you for initiating this conversation again. It is an obvious and continuing gap. This has been our experience too in finding that some physicians are still very uncomfortable with end of life discussions. As your example shows, it leaves us (patients and families) grappling with ‘next steps’ and confusion about what is ‘reasonable to expect’. It can also cause rifts in family dynamics. You are absolutely right – patients and families want to have these conversations. Helping physicians understand the importance of and the ‘how to have’ these essential conversations is one place to start. Another, and for us, as patients and families, might be to help empower and prepare us so that we may be better able to ask more directive questions in these situations. I think fear continues to prevent many of these discussions.

  35. Kerry Stewart

    Thank you for this sensitive and most timely article. If doctors are afraid to talk about the likelihood of disease projectory, then patients and loved ones don’t stand a chance of managing their own priorities as they begin the march towards death. Death becomes a “failure” rather than a sad but normal part of life. Being honest with patients in a gentle but forthright way respects their right to have some control over what is important to them.

  36. D.

    “When death is near at hand we should be ready and make the plans that make this part of the “ circle of life” a beautiful memory. We are saying a last farewell in a very personal way. To say goodbye is an extraordinary gift.” to reiterate Karen Barlow’s very articulate comments above….As a former Palliative Care nurse in the community I was gifted with the privilege of being allowed entry into the lives (and homes, in my particular work) of those beautiful humans journeying towards their death. The truthful acknowledgement of what is happening to the person and their loved ones, even if death may still be months away, is what allows that “beautiful farewell” to evolve and gradually take shape, involving family, involving community to become the extraordinary gift it truly can be for both the person who is dying and for the family,friends and the community from which that person is now departing. In my work I previously witnessed it, and in my personal life I have lived it with friends and family who have died, and these are the most poignant memories and lessons of my life that I now carry in my heart. As humans we need to be helping each other along this road to be able to acknowledge this inevitable farewell, and allow it to evolve and to take meaningful shape for the sake of the dying person and their personal community, as well as for the future care and health of our entire society. It is so very important to us all.

  37. Mary Beer

    Thank you for this article! As a Psychosocial/Spiritual/Bereavement Clinician working in palliative care, I often have to support patients who seem to lack clear information and are confused about their illness and prognosis. I witness the impact this confusion has on their emotional/spiritual health. In the therapeutic work of clinicians who provide supportive counselling and spiritual care, we know that our best work with people can be blocked by the absence of clear and truthful information about their illness and prognosis. A lack of truthfulness about the illness progression and preparation for the dying process also inevitably leads to a more emotionally painful, conflicted, and potentially complicated bereavement process for loved ones. All too often during follow up bereavement care I hear the anguished cry “We were never told…..!” and find myself involved in another layer of therapeutic grief work that includes at least trying to make peace with the health care experience prior to death.

  38. Karin Milne

    Thank you for this article. As a sixty something year old I’ve had occasion to consider these issues as close family and friends to go through the dying process. I’ve seen everything from “I am NOT going to die, and I won’t talk about the possibility no matter what the odds, I’ll beat this” to “I asked the doctor to tell me what he knows WHEN HE KNOWS, I want to spend the rest of my life living the truth.” In the first case, the person died a few days later. As a family member I found the medical professionals would only tell me the truth if I asked directly. I did this when my mother was dying, but when my sister asked if there was hope she got completely different information. Maybe patients and families need some guidance about how to let the doctor know you are ready to hear what they know. There are pamphlets about everything else, why not this?

  39. Nick koutras

    Excellent well written accurate and much needed
    Doctors should always be open and honest and not sugar coat things when there is no hope of recovery

    Well Done

  40. Elisa Macabuag

    Absolutely agree with the sentiments this article expresses. Well said! I hope that this helps open the pathway to realistic and honest communication that truly will benefit patients and families.

  41. Arlie Singer

    I think many physicians lack the skills for such a discussion and need coaching on exactly what they might say and how to approach what they may regard as subject too devastating to burden the patient with after having just received a difficult diagnosis.

  42. Sam Jephcott

    Bravo! At last a professional that believes in telling the truth. Thank you

  43. Carol Shields

    Thank you, Sam, for this thoughtful article. Since I last saw you, my mom was diagnosed with Alzheimer’s. Death will come, probably within eight years, and I know it, but mom doesn’t. Even though we’ve gone through material from the Alz. Society together–the stuff that says “terminal” or “ends in death”, it hasn’t really registered. In the time it took to get an actual diagnosis (about two years), we have moved beyond a time at which learning about and retaining info about the trajectory of the disease is… possible. She’s firmly planted in the Now and LongPast, and making plans for “using the remaining time well” or for end-of-life is cognitively slippery for her. She’ll forget tomorrow, or in about 20 minutes. All this to say that the ability to more quickly access geriatricians, proper testing, and diagnoses might allow this group to hear their truth in time to have some say in the rest of their lives. That, in turn, gives caregivers more peace of mind about decision-making down the road.

  44. ODL

    Excellent article. It has the “ring of truth”.

  45. Heidi

    Thank you. Doctors are not rewarded for telling the truth in these situations for reasons that are obvious…when there is reward for health and not for treating “dead people” things may change.
    It is emotionally draining to be the last one to see a dying patient and find you are the only one who spoke the truth about death as an outcome.
    All the best to you…the service you provide is not unnoticed by families who deserve to know their time with loved ones is borrowed at best

  46. Valerie Cooper

    I am so comforted in knowing I’m not alone in coming across these types of situations as a hospice palliative care nurse practitioner but saddened at the same time, for my future patients and their families. We need to get better at dying as a society- for all of our sakes.

  47. Dr. Ed Weiss

    Very well said, Dr. Winemaker! I’m a family physician who cares for a large number of elderly and frail patients, and the lack of honesty in terms of long-term prognosis is something I deal with every day. One especially worrisome manifestation of this problem is when a frail, elderly person gets admitted to hospital, and is then discharged home without anyone telling them or their family members that their death is likely imminent. I have seen this happen several times over the last few months when I was asked by a home care agency to attend these newly-discharged patients at home, and in each case they died within weeks of discharge. Instead of being connected with palliative care, they were told to go home and follow up with their family doctor (despite the fact that they were bedbound and in no condition to leave their home). This is shameful and should not happen.

  48. Sigal Balshine

    An amazingly helpful and well written article. Should be mandatory reading for every medical student, health care professionals and patients alike.

  49. Ruvan Waltman

    Excellent and necessary article! Avoidance of pain, which ironically, is unavoidable, only clouds and obscures the truth. You have just identified an important stream of medical education and training that should be part of every medical school curriculum. To address not just the technical part of medicine, but equally as important, the souls of patients and their families. It is time.

  50. Danielle

    As a healthy 50 year old woman who has not had to endure the unimaginable pain of facing my own death or that of a loved one, I empathize with all of those patients and their families who have not been able to prepare adequately for the end of life.
    I can imagine the sense of relief
    patients and their family must feel by being given full and honest disclosure. As you said so eloquently in your article, half truths do not assist anyone in the end.
    Should I ever be faced with this personally, you have empowered me to be direct with health care professionals and to ask specific questions that might be uncomfortable yet so important to do.
    Thank you for not shying away from this topic. You are amazing!

  51. Tricia

    You are amazing! Such a difficult and important topic….an excellent article and so well-written. Everyone deserves the truth – your patients are lucky to have Dr. Samantha Winemaker as their physician. I admire your honesty and compassion. This should be mandatory reading for all physicians and medical students.

  52. Karen

    Dr. Winemaker has written an excellent essay on the ‘final taboo’ – death. Helping another human being “shuffle off their mortal coil” demands much from the doctor involved, including the contemplation of his or her own mortality. It is understandable that many doctors would prefer to fend off such thoughts and so have difficulty confronting and discussing the process of dying with their patients.
    But Dr. Winemaker demands more of physicians, as she does of herself.
    The time has come for doctors to be honest with their patients when death from an illness is certain and close at hand. One can easily imagine the relief of Dr. Winemaker’s patient and the family when a doctor was finally honest with them about what they were facing, and offered help and reassurance for their “journey”.
    Perhaps we are entering a time in medicine in which withholding information about the expected course of an illness will be seen as sub-standard practice.
    I look forward to hearing more from Dr. Winemaker as she navigates newer ways to look at palliative care.

  53. Nicolle Hansen

    Thank you for this honest article Samantha. Unfortunately we encounter this far too often in the home and at a time when the patient and family are feeling desperate and hopeless. They feel deserted by the people who have tried to provide a cure and unsure how to trust the ones who want to continue to journey with them to the end.
    Open communication is essential, let’s start it earlier.

  54. Carol Campbell

    So well written, and a conversation so desperately needed. Thank you!

  55. Kieran Quinn

    Thank you for this very compelling article, Samantha. Much of your argument is predicated on the fact that individuals make rationale decisions when provided with information about the natural history of their disease. In fact, there is a body of evidence that suggests that neither healthcare providers nor patients/caregivers follow this rule. The latest research shows that despite our best disease-modifying therapies in 2018, the median survival for heart failure at 5 years is still an abysmal 25%. Even in my best attempts as a General Internist to help my patients see the “big picture” as we move along the course of their disease, their decision making is often not anchored on this alarming prognostic statistic.

    Open, honest and transparent communication is definitely a vital component of care for these individuals. But morphine is still a helpful adjunct to improving their quality of life by reducing pain and dyspnea, even if they don’t recognize or accept the inescapability of the ultimate outcome.

  56. Christine Tripodi

    Hi Sam. Wish you were on our case. Not so much for Tony but for my kids. Only now is Mark accepting his fathers death. I think..I hope. Wonderful article.

  57. Sandy Buchman

    I too thank you Sam for raising this issue of physicians not being willing (or able) to talk to their patients about dying and death. But it makes me wonder as to whether we, as teachers of medical students and residents, are somehow failing in fulfilling our responsibility to adequately teach and help our learners to develop competency, confidence and comfort in having these conversations with their patients. Every physician, of whatever specialty, should reflect as to how well he/she/they assist and support their learners in discussing dying. We as physician teachers have to “model the way” and strive to emphasize the importance and necessity of these conversations for any patient (and their loved ones) so that the “false hope” experienced by Anne and Frank can be avoided.

  58. Elaine V Antone

    Thank you for sharing this today. Truth, blunt honest truth is what I would want and need so that I could die with dignity. Elaine Violette Antone.

  59. Alex Hayward

    Brilliant article that gets right to the truth. Sam, this is just another reason why your reputation proceeds you. Having been a recipient of a Doctor who specializes in palliative care I soon realized the importance of up front truth. It makes the process so much better for the patient and the family. Palliative care is one of the most important steps in a process for all concerned. Keep up the good work.

  60. Pierre Viens MD

    In 2018, there is a new, legal and appropriate option called « medical aid in dying » for Canadians arriving at the end of their journey. Do you think offering the truth to patients should include ALL necessary informations, including MAID, in all fairness and respect for their freedom of choice? Having been involved in 34 such cases in the past two years (and in severall thousand more dying trajectories as a palliative care specialist over 25 years), I include this new deal in my initial talk with them after I have asked them permission to do so. Some have choosen this oportunity, others have engaged into deeper reflexion about it, families got deeply involved, etc.: all, without exception, expressed their gratitude for respecting their freedom to choose since NO other health professionals had dared to do so. Being correctly informed does mean being influenced or coerced to decide.

    • Pierre Viens MD

      Correstion to my own posting: « Being correctly informed does NOT mean being influenced or coerced to decide »… Apologies.

  61. Joanne Smith

    Hi Samantha,
    I so enjoyed your article. Communication has always been an important subject between patient and Dr. You are obviously in the right specialty as it takes a special human being to be in the palliative care community. Preserving “hope” for the patient has always been a tricky subject. I’m sure there is a fine line there. And I’m sure communication is the key! Your patients are blessed to have you by their side.

  62. Jocelyne McKenna

    Your article touches on an important gap not only in western medicine but also in society at large’s openness in discussing death. But as a MAID provider, I couldn’t help but wonder whether this death-talk aversion you so poignantly describe is at the core of the chasm that separates MAID and palliative care in Canada today.
    While it is true that many palliative care physicians have welcomed MAID as part of end-of-life planning for their patients, many have put up a stone wall and refuse to even discuss the options with patients who enquire. Sadly, this includes the Canadian Palliative Care Association whose recently published 2018 annual meeting agenda does not include ANY mention of MAID.
    Since C-14, death in Canada no longer needs to be a long drawn out period of decline and suffering. Denying patients the information about ALL their options when asked, is paternalistic to say the least.
    Patient autonomy is one of the core values of contemporary biomedical ethics. This is why the “doctor knows best” attitudes of the past are longer acceptable, whether we are talking treatment options or end-of life.
    I applaud your honesty. It needs to be taken a step further though. I respectfully suggest palliative care physicians everywhere in Canada and all those involved in the care of the dying consider including MAID in their end-of-life discussions, including it as an option in the patient’s “roadmap” enables individuals to decide for themselves how their journey own will end.

  63. Jocelyne McKenna

    Dr. Winemaker,
    Thank you for this. Your article touches on an important gap not only in western medicine but also in society at large’s openness in discussing death. But as a MAID provider, I couldn’t help but wonder whether this death-talk aversion you so poignantly describe is at the core of the chasm that separates MAID and palliative care in Canada today.
    While it is true that many palliative care physicians have welcomed MAID as part of end-of-life planning for their patients, many have put up a stone wall and refuse to even discuss the options with patients who enquire. Sadly, this includes the Canadian Palliative Care Association whose recently published 2018 annual meeting agenda does not include ANY mention of MAID.
    Since C-14, death in Canada no longer needs to be a long drawn out period of decline and suffering. Denying patients the information about ALL their options when asked, is paternalistic to say the least.
    Patient autonomy is one of the core values of contemporary biomedical ethics. This is why the “doctor knows best” attitudes of the past are longer acceptable, whether we are talking treatment options or end-of life.
    I applaud your honesty. It needs to be taken a step further though. I respectfully suggest palliative care physicians everywhere in Canada and all those involved in the care of the dying consider including MAID in their end-of-life discussions, including it as an option in the patient’s “roadmap” enables individuals to decide for themselves how their journey own will end.

  64. Phillip Staibano

    This is a wonderfully written piece! It is so relevant given the patient-centred trajectory of healthcare delivery and the changes to end of life care in Canada. As a medical student, I find this piece to be a wonderful reminder of the importance of listening and honest communication in patient care. Thank you for writing this article.

  65. Marie Deitz

    I am a hospice nurse and work with palliative care team at a local hospital. I have run into this exact scenario many times recently. It breaks my heart for these people who maybe could have taken a different path in their treatment course.
    This article should be sent to every physician who treats patients with all diseases. This will be one of my go to articles. Thank you for writing this.

  66. Mary Klingenberg

    Well said, and I hope policy makers and ministry leaders take notice. As a hospice nurse with 10 years experience who has worked alongside Dr. Winemaker, I can testify to the truth of her words. I think it’s the look of betrayal on their faces that bothers me most. I can’t count how many times people have told me ‘thanks for being honest – that’s what I needed.’

  67. Judith Wahl

    The very sad part of this excellent article is that its clear that physicians are failing to get INFORMED consent to treatment from patients because they are not providing sufficient information to the patient to help them understand their illness. Illness understanding is a necessary prerequisite to the patient being able to exercise their right to make decisions about their own health care — which is the informed consent- when the health practitioner offers them the treatments . The requirement to get an informed consent is a fundamental legal and ethical rule. What has happened to informed consent?

  68. Janelle Kolenich

    Well said! I thoroughly enjoyed working along side of you. You are amazing at your job and I will never forget the Palliative Physician you are!

  69. Barry R. Ashpole

    This is an excellent illustration of a key point I try to drill into my students (mostly nurses, social workers et al): “There’s a direct correlation between the quality of care and the quality of communication.”

  70. Lesley Holmes

    Excellent article. As a nurse at St. Joseph’s Healthcare, I thought of our wonderful, kind and careing Dr. Woods as I read each word. Can’t imagine St. Joe’s without her!

  71. Liz

    Such an important article for all health-care workers. We sometimes feel we are protecting our patients from a harsh reality when what they really need is time to prepare for and accept the inevitable final phase of their illness. Thank you for your insight.

  72. Dale Guenter

    Just beautifully said, thank you Samantha for such a brave statement. Truth-telling – where it all has to start. We may need to compassionately tease apart the lies we tell ourselves – as we die, or as we care for those who are dying. Why are they there, how do they help us? And find ways to nurture the realistic hope that can grow even on dying ground – for the way our passage will happen, for the lives of those left behind, for our own legacy. Maybe those can help make the truth palatable?

  73. David Dick

    Excellent article. Telling the patient the honest truth is the hard thing to do but ultimately what they need to hear. My father told me as a young boy that “nothing worth doing in life is easy“. You have a very noble profession.

  74. Ellie

    Thank you Samantha for your article. I am struck by some of the comments about patients focusing on ‘hope’ and therefore appearing to be in denial about the inevitability of death and the difficulty clinicians have predicting disease progression for many chronic diseases. I believe that even without a clear prognosis it is still crucial to ‘walk two roads’ with patients and families. Offering patients hope for more time and relief from symptoms does not excuse clinicians from also preparing patients and families for the possibilities, the ‘what-ifs’, the plan B etc. Most illnesses do not stay ‘stable chronic’ forever and at some point there will be a tipping point. Clinicians can offer ‘hope for the best’ from treatments, but simultaneously should be reminding patients that the condition is likely to change, have many twists and turns, and the clinician can offer the patient and family reassurance that they can talk openly together about the forest and the trees of the illness. A crisis is the worst time to start these discussions and every patient shouldn’t need to wait to see a palliative care clinician before they feel someone has been open and honest with them.

  75. Dorothy Sweet

    When my husband was dying I had to ask the internist very specific questions because he was skirting the seriousness of where he was at. Each time he answered he would nod yes and look at the floor. They aren’t always comfortable telling it like it is.

  76. Kelly

    Thank you for the article! It was thought provoking and honest. There need to be more like you!

  77. Della

    What an amazingly honest approach to a reality that we see everyday but is not discussed so clearly. Everyone has a right to know exactly what is going on with their diagnosis regardless of the truth

  78. Tammy johnstone

    Definitely loved this article as we are going through this with my “single..55 year old brother” who has stage 4 lung cancer. One thing your article never touched on was the dr who said he had 3-6 months to live then never giving follow ups as that is not part of “pallative care”. I left my family to go stay with him and he is better now than when he was first diagnosed (last May) After reading your article at 1 am and having a pallative care appointment the next day I was totally shocked and heartbroken when I started to ask a question the nurse immediately got very aggressive with me and told me that that is for the other drs and not pallative care. When I told her I asked the radiation dr and he said that you were all a “team” she told me that she was tired of hearing that as it is not the case. He was immediately given morphine at diagnosis and increased immediately when he had a bad day. He ended up in the hospital at the end of nov very sick. It ended up it was a combination of too many meds and alcohol. He had also never renewed his steroids after they ran out as he thought that was the end of them. He actually could not walk or finish a complete sentence when he got there and they asked me if I wanted him to stay in the hospital until the end. After a week of no alcohol or pot he was back to his normal self. They put his meds in blister packs so he would know what to take. He is still very over medicated.

  79. Maude Wing

    Great article, with an excellent recommendation that we as physicians should take as a critical reminder of our responsibility. I am a family physician, and my one frustration however, is my experience with the disconnect between what I have discussed with the patient and what they have taken away as their interpretation of our discussion. It hasn’t come up often (or at least I don’t hear of it happening often) but I have run into cases where, as an example, I have spent hours counselling a patient and their family about their prognosis and life expectancy, expected tragectory of their illness, what can be offered for palliation, etc, only to hear later from a nurse or another colleague that the patient and/or their family is still under the impression that they have a curable illness. Most often, patients and their families share a mutual understanding of what is truly going on, however sometimes despite our best efforts, patients hear what they want to hear, and it can be very difficult to change those perceptions. I encourage you to not put 100% of the blame on physicians; it’s more complex than that.

  80. Bob Lester

    Samantha, well written, sensitive, empathetic, informative and spot on!!

  81. Rebecca

    Sammy, I am so grateful you’re my cousin. So well said! After reading your article I am a better informed patient and if ever hit with a nasty diagnosis, I will insist from my medical team the same forthright candor with which you so thoughtfully wrote. If faced with such treatment / quality of life choices, I will seek your input most assuredly. Your brand of kindness is much needed and always appreciated.

  82. Martha

    Thank you so much for this article…I have printed it and am giving it to my doctor, and any doctor I may encounter in the future.
    Not only do all Doctors need end of life training it should be addressed while in medical school and with all staff in all hospitals and hospice care facilities.
    Thank you again for your insightful article.

  83. Joan Giannone

    Excellent article. Thank you for sharing this important advice. I like your admonition that Physicians must be able to “walk two roads” with patients suffering from terminal diseases. Yes, it is important to have hope and try every remedy, but when the prognosis is clearly death in an estimate-able length of time, people deserve to know this – to make the most of their time left, put their affairs in order, eat as much chocolate as they want – whatever they so choose. It is their life, their death and their right. Paradoxically, giving a terminal patient the hard truth may be one of the kindest, most humanitarian things a Physician can do.

  84. Aideen Burke

    Perfect Dr Winemaker. Thank you for all that you do, and thank you for being such a truly amazing role model

  85. sam plover

    Great Article.
    It is not just the problem of doctors not discussing chronic progressive illnesses. There is an even bigger problem of minimizing it, painting a picture on charts that leads to endangering the health and care of a patient.
    And it is still happening to women more than men.
    One thing is for certain, when a patient has morphine in their prescription, that is an admittance of severity.
    Patients come with certain behaviors, many might look healthier to the Doctor than they really are, since some push themselves until the end.
    I am disapointed in the lack of truth and honest communication between doctor and patient. We are all equal.
    Chronic disease often leads to very informed patients. I believe patients know their state of disease and to patronize, dismiss, or fabricate is so very wrong on so many levels, and to have people like Samantha wanting to talk the talk is refreshing.
    I believe you can have health until death. But health is about much more than the physical body. It is about feeling safe within an ailing body, a rallying community that have the patients wishes foremost in their minds. This eases not just the patient, but also friends and family. And to boot all, I think if doctors were on board, they could go home feeling better.
    I think we know we are only here for a time, and why not ease the remaining time as much as is within our control and empathy.

  86. Toby Stewart

    I would like to have doctors/providers inform me of all of my options — including MAID — as soon as possible. (According to our CNE at a secular public hospital, hospitals can’t even mention MAID as an option for a patient to explore — but they are allowed to mention only ‘palliative’ care.)
    I’d also like the option to choose MAID long before I may need it — and to have my wishes carried out by my public healthcare system when it’s my time… irrespective of whether I may then be no longer defined as ‘competent’.
    Toby Stewart

  87. Radu

    The literature says that doctors don’t tell patients about their prognosis because of the “emotional connection” they have. This is a romantic idea that tries to justify a horrible and cowardly behavior. As a seasoned hospitalist, I found that the truth about keeping patients in the dark regarding their disease consists of two reasons: doctors don’t care, or they have a financial interest. Period.
    Oncologists are always after billing for that extra chemo session, cardiologists are always after billing for that extra cath on dying patients and they know they will not get sued because families will say “at least they tried” while filling their pockets even more. I have walked in on cancer patients in the hospital taking agonal breaths while chemo is running. It is utterly disgusting behavior. And palliative care physicians are really good at telling the truth, but without the back up of these monsters, patients and families will not believe them.

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