I decided to preface these with an article best read in its own context, because it's about American doctors and the US system of health care, and America is not Australia. But it makes some points that are valid in any country at any time.
Also, because it's published in the Guardian, the comments, all 165 of them, are mainly by British doctors and observers, so that gives it wider currency. I'd like it to be published in Australia too, and get comments from Australian doctors, but at least there's a discussion with Ken Murray, the author, on an ABC programme.
He begins with the story of a doctor friend of his, a cancer specialist, who, in one of those tragic ironies, was diagnosed with pancreatic cancer.
These are mere excerpts, remember. I do not endorse everything said here – please bear this in mind. In particular, I have strong feelings on what in my case is likely to be quite impractical; dying at home. But more on that in due course.
He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.Comments on this are fine. I will note them, but I don't intend to respond until I write my own thoughts and the reason I feel as I do.
☤ ☤ ☤ ☤ ☤ ☤What’s unusual about them is not how much treatment they get compared to most Americans, but how little.
☤ ☤ ☤ ☤ ☤ ☤They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
☤ ☤ ☤ ☤ ☤ ☤...they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen....
☤ ☤ ☤ ☤ ☤ ☤Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life.
☤ ☤ ☤ ☤ ☤ ☤What it buys is misery we would not inflict on a terrorist.
☤ ☤ ☤ ☤ ☤ ☤Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
☤ ☤ ☤ ☤ ☤ ☤To administer medical care that makes people suffer is anguishing.
☤ ☤ ☤ ☤ ☤ ☤“How can anyone do that to their family members?”
☤ ☤ ☤ ☤ ☤ ☤When doctors ask if they [patients/relatives] want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.
☤ ☤ ☤ ☤ ☤ ☤...unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor.
☤ ☤ ☤ ☤ ☤ ☤The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families.
☤ ☤ ☤ ☤ ☤ ☤When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.
☤ ☤ ☤ ☤ ☤ ☤...doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.
☤ ☤ ☤ ☤ ☤ ☤One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare.
☤ ☤ ☤ ☤ ☤ ☤But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures.
☤ ☤ ☤ ☤ ☤ ☤Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
☤ ☤ ☤ ☤ ☤ ☤
I wish to acknowledge the Guardian as source and my sincere thanks to Ken Murray for giving me this starting point.
This, Denis, reflects so much the things I fear, the ways I think. For me, those extracts sum up the whole situation.ReplyDelete
You have invited comments, although it is with some diffidence that I make them. Please forgive me if I am unknowingly tactless. It may be that the notes below could be of interest to other of your blog followers who, like us until recently, were not aware that the Advance Health Directive even existed.
Without going into details, we have lost three family members - one of them young - under the circumstances so well described above. The dilemma of the doctors, who dare not directly advise; the dilemma of close relatives who need medical guidance in making unaccustomed life and death decisions. Through this, and our family doctor, we discovered the Advance Health Directive. This lengthy document we downloaded and each filled one in. These was then checked and signed by our doctor, witnessed by a JP and left with our solicitor. Now all family members know our wishes should we reach that stage, and those circumstances under which we would not want life support to be prolonged.
Very good re the ACD, Bob. Now, make sure it is readily accessible should the circumstances arise. One poor old guy's wife just happened not to be around when it was needed and he found himself in that very hell of tubes he was so keen to avoid. There was no happy ending. [I mean, if he'd gone on to live another 20 years of good health and died by being shot by a jealous husband – that's a happy ending!]Delete
I think it's sad that in many cases, health care - in the U.S. at least - is at its best when one is in hospice. During my dad's illness during the ten weeks between the time he was diagnosed with GBM and his subsequent death, my family had to navigate through so much on our own, almost begging for help in several areas of care, and guessing about what was right in other areas. The "care" my dad received during his second and final hospital stay during which he had a terrible infection of an undetermined source was nothing short of embarrassing - and possibly even neglectful. It wasn't until we grasped at the only realistic option we felt we had left for his care - hospice - that we started to feel some sort of control over the situation, but, of course, ironically and sadly at that point there was no controlling any of the disease process for him and the hospice care lasted less than a week before his body gave out. I will never forget one of the last conversations that I had with my dad's oncologist, standing in front of the nurses' station on the onco floor a few days before my dad was discharged to his home with hospice; I had to point out the reality of my dad's worsening condition to the doctor and then ask him directly if it wasn't time to call hospice. When he waffled still, I asked him what HE would do if it were his own father in this same set of circumstances, and he responded that his dad - also an oncologist by the way - wouldn't BE in that situation, because his dad had specified long ago that should be ever be diagnosed with an aggressive, terminal cancer, he would NOT opt for treatment that was likely to significantly lessen his quality of life, like chemo. I wasn't sure if I should slap the onco for not having told us that in the beginning - after surgery to remove the tumor had been less than successful in restoring any of the physical or mental function that the GBM had stolen literally overnight - or hug him for finally making it clear to me that the treatment was just too hard on my dad's body given his condition. I opted, by the way, for neither, but in retrospect I think I should have gone with the slap.ReplyDelete
One more thing: We did arrange for my dad did come home to die, and it was one of the best if not the best thing that I have ever been able to do for someone. He was miserable physically and emotionally in the hospital and would have been that way in any facility; he stated so many times during his final hospital stay that he just wanted to go home. I know that hospice care at home isn't for everyone, but, in my dad's case, it was what he wanted and we were able to work together to make that happen, which I think helped ease his burden as he neared the end. So many times during his illness and since then I have considered that things could have been so much worse for him and for us as a family, and in our case not having been able to provide him with the feeling of a safe, peaceful, familiar environment at the end would have been one example of that.
Stephanie: I am up to Pt 12 of your story and don't want to comment too much till I've read it to the end, but I can see it is such a different one in so many ways I find it hard to grasp how he couldn't have had better treatment in the first stages. I can say without hesitation that we received nothing but kindness in the time of radiotherapy and oral chemotherapy in Melbourne, with few hiccups and the best treatment possible. But then I'm sure our public health system is heaps better that yours.Delete
With all the money wasted on those disgraceful wars in Iraq and Afghanistan, you could have had the health system your people deserve.
Stephanie, I haven't had time to read your blog as yet, but given your experience was 'compressed' into 10 weeks, I think your reactions were about as best as could be, and I believe your father would have been rightly proud of the daughter he'd raised.ReplyDelete
Just don't second guess or would've could've, your actions, or those of your father's doctors. Everybody did the best they could in a bloody awful situation. Sorry to be off-topic.
Thank you for sharing your experience Stephanie. I am so glad for both you and your father that the ending came at home ,the way you wanted. That is a good memory to hold onto. My biggest sadness about my mother's death last year is that she had been quite happy living in a pleasant nursing home for 5 years after her stroke ,but was moved to a 'high care' section 2 months before she died. The upset of not knowing where she was hastened her death, I am certain, and she, a happy soul, became confused and sad. The move was not necessary and nor was I advised of it; it was a fait accompli which I could not reverse. I was broken hearted after all she'd been through so bravely that she was treated like a useless sack at the end, despite still being very much her loving self. Your post brought it back to me and I realise I am still angry! As for Denis, it has seemed to me that although the chemo was very unpleasant it probably did extend his life until the newer drug was tried, and that (from my perspective!) he has therefore had several years further of sharing with his friends and family. Would he choose differently? Only he can say. Each circumstance is so different, isn't it.ReplyDelete
Julie: your mother was treated disgracefully by the private [you would call it 'private', wouldn't you?] health system and that is certainly the Achilles heel for Australia in health care. That and disability, which is supposed to be being addressed at the moment.Delete
Yes, each case is different, and we were bound to take each step as it came. I believe, looking back, that there was nothing we should have done differently, which is a very satisfying thing to be able to say.
PS Chemotherapy could have been worse. I threw up only once, on the first day of oral chemotherapy in Melbourne; never since. I'd say if it's advised for a patient, it should be done, unless there are compelling reasons otherwise.
Wow, Julie, your distress about that situation is certainly understandable, and I am sorry that you and your mom had to go through that.ReplyDelete
I think it's true that doctors base many of their decisions on the potential for litigation, from over-prescribing medications ("How about some antibiotics for that cold?") to having patients come back to their office for a re-check to even performing biopsies and CPR and other life-preserving procedures. It's both fascinating and sad at the same time that the majority of physicians do not choose "heroics" (not sure that word really fits for what is typically done in that category) for themselves - or even some treatments like chemo for aggressive cancers as in the case of the stated choice of the father of my Dad's oncologist, who was an oncologist himself. Knowing when to say WHEN, though, obviously, can be a very tricky thing, maybe especially when it's possible that the disease process and/or the depression that often accompanies a terminal diagnosis have affected one's memory and/or reasoning abilities.
Looking forward to reading more of what you have to say about this subject, Denis; thank you very much for your words in your response to my first comment above!
As I said, more are coming, in due course. You aren't on Twitter, are you? My email is simply a gmail one, with my 1st and family name separated by a dot. I could let you know then if there are additions. [Not spelled out to avoid address bots.]Delete
Yes, I am on Twitter as DixieCkn and just sent you a Follow! I will email as well, really appreciate the contact and your insight and wisdom!!ReplyDelete