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

My mom in hospice 6mo.with alzhiemers and doctors still can’t find a med that would help her sleep she is awake 34 to 38 hours in a row sleeps 1 day and a half and next night up all over again..I’m a realistic person we all die eventually…This woman who never bothered anyone and healthy always worked hard single parent of 4 kids..Helped anyone she came across/ As family we are here for her,no nursing home for her..But medically wise im not to happy..Thank you

I am so saddened reading this article and realizing the my beat friends dr hasn’t been honest with her. She is suffering from cancer. Diagnosed 4 months ago, which traveled to her adrenal glands, bones and now the brain.
The have been dragging their feet and just this week finally were to start radiation. She was hospitalized because of a Kung infection. The following day took her for her first radiation treatment. She’s been in a lot of pain over the last 2 months and not getting any better. Now finally hospice is coming but why hasn’t the dr been honest with us about how bad this is? Instead she’s told he had a patient with similar illness and has been 5 years cancer free. It would have been much easier for all of us if the dr had been honest with us from the beginning. Instead we’ve been working in “false hope” shame on him!!!
This is false hope.

Ho. May I ask how I may get in touch with the author of this article?
Thank you

Thank you for being a truth teller . I learned a lot from your stories! Louise

My daughter is 66, had double mastectomy for breast cancer about 5-6 years ago. She had chemo treatments, put on pills, & went into remission, but didnt last long.. dr put her on cancer pills & radiation, but no use, she was allergic to the last 2 pills, her pain was getting worse, she was on hydrocordone, 10 mi 3-4 times a day, still not doing any good, he has now prescribe morphine 2 times a day. Is the end close he hasnt said anything one way or another, just to tell her she is a fighter

Thank You Very Much for taking Your time to share this valuable information.

My husband was terminal and we discussed with his Dr about morphine. My husband myself and two boys had a discussion and he said he wanted us at his bedside when he died but was not ready for morphine to be administered. The Dr gave orders to give him morphine and the sister in charge phoned me to advise me of this. I stipulated that under no circumstances is she to give him morphine and to ask Dr to call me. I had been at his bedside for 21 hours non stop and just came home to bath. When i got back his vitals were shocking. I questioned all the staff and was assured that no morphine was given. They Lied. He died alone!!!! i was not there and neither were my sons. I am so distraught. Even a criminal on death row gets a final request!!! my husband did not. Can I have his body exhumed and what are the procedures i need to follow.

thank you

Thank you so much for this information. This is exactly what happened to my mother. We never new ahe was goin to die. We were only told on Wednesday and she passed on Saturday. We did not even say our good byes this is so sad that doctors are not honest with their patients and families. Thank you and God Bless.

I agree with Samantha and think an honest dialogue with patients is required to reassure them that they will be cared for appropriately in their final days.

Thank you. Thank you so very much for offering me validation of these feelings and frustrations. I have been searching, screaming, begging any of my father’s doctors to be honest with me fir months. I get bounced from specialist to specialist and given no answers. All while my father wastes away and I’m wasting time being caudled by doctors because it’s easier for them. Where do you go to get answers¿ To be told the truth? I am set to live my life in doubt and without the peace of knowing I did everything that I could to help my dear father live or be as comfortable as possible for as long as possible. I get to carry that with me, the guilt,anger and distrust for all if my life. For what? A doctor got out of saying something hard to a family? I point blank asked you to tell me, more than once. Why, why can’t you do it? just

I completely agree with what you’re saying. My father is currently receiving palliative radiation for 4th stage NSCLC that metasticized to his brain, lymphnodes, adrenal gland and bone. The many teams that have been helping him at the Cancer Centre in Ontario never once told him of life expectancy, explained what palliative care even means, or even the exact treatment plans if all things fail. At the beginning this worked as he didn’t want to know, so I’m assuming that they try to “read” the patient and give out bad news on a “need to know” basis. He still has hope that the doctor’s treatments will help him but it is painful to watch due to our own research that we have done and know what’s ahead. Now it is up to the caregivers to continue this delicate dance. This is poorly handled and not realistic. A patient deserves honestly and should be given the chance to make thoughtful end-of-life preparations so that they can spend quality time with those that he loves the most.

Please get in touch with me. I lost my 90 year old mom who lived with me for 18 years and I took care of. I was with her every doctors visit and hospitalization and when she died I didnt know anything I should have. Now I am left with horrible guilt.

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.

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.

Amazing article!

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.

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

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.

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

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.

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.

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.

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.”

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?

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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.

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.

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.

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.

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

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”.

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?

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.