Sometimes, just say no

Posted by on Jul 21, 2015 in Cancer Care, End of Life | 18 comments

Sometimes, just say no

Let me be clear. I have spent a career, my adult life, 80 hours a week, 131,000 hours, fighting the dread disease; every method, every drug, every machine, every medical technique, every sinew of my being, to control or cure malignancy. A synopsis of my existence will say, “fought cancer.” Nonetheless, let us take a step back, if just for a moment, and reflect on the idea of saying, “no.”

In 2015, approximately 60% of patients with cancer will be cured. This is a remarkable improvement over a generation ago, when the disease was usually fatal. Sadly, this means that four out of ten cancer patients still die of their disease. This is a terrible, tragic truth. It is also a silent truth.

Nearly 100% of patients with metastatic lung cancer will die. However, studies indicate that 70% of patients with advanced lung cancer believe that the purpose of chemotherapy is to cure. Similar data and experience exists for most other aggressive cancers. Patients often lack a realistic understanding of what treatment can and cannot do.

Is this denial? Are patients unwilling to face the harshest reality? Sometimes. There is a limit to what each of us can handle; how much anxiety, threat and bad news we can cope with at any moment.

However, I believe that one reason many patients do not have a realistic understanding of the limits of medical therapy is that the list of treatment choices presented by their treating doctors includes drugs, surgeries and radiation, but rarely does it include the words, “and if you decide, you do not have to do anything to treat the cancer at all.”

There is no law that if a treatment exists with a small chance of extending survival for a small amount of time, that it is necessary to take that treatment. Just as there is so much bad news each of us can handle, so there may be too much traumatic therapy with which we can cope. There is a hard line for each of us after which life is not worth living.

Still, if any sort of treatment is available, no matter how limited the benefit, doctors rarely offer “quality and comfort,” instead of active therapy. We do not put into perspective the reality of a fatal disease, the potential complications of medical treatment, or give a clear picture of what may be coming in the weeks and months ahead.

We act as if not providing therapy is “giving up,” instead of reassuring each patient that we will never give up on them or on life, but that treatment may cause more suffering than benefit. We do not allow each patient the opportunity to balance their hopes, dreams and fears with the reality of what can actually be achieved.

Let me be clear. Even though I have spent my life fighting cancer, I do not have the ability to judge what life means to you. Each of us should have the freedom, opportunity and duty to decide, for ourselves, how to live life, especially at its end. I hope I can step back so that each of my patients has the chance to reflect and consider their future, and even if they to say “no,” still be by their side.

 

 

18 Comments

  1. Such an important conversation, Dr. S. Thank you for this reminder to both physicians and patients. What a gift that statement would be to many patients and their family members: “You do NOT have to do anything….”

    That’s understandably yet tragically rarely even on the radar. When my Dad was dying at age 62 of metastatic lung cancer, not one person in his hospital even mentioned the remote possibility of the “D” word. Instead, his oncologists transferred him (with his frantic family following behind the ambulance) to a large cancer centre in another city two hours away – where the family was gathered and told that he was far too ill to begin any type of aggressive curative therapy.

    And that useless trip was how he spent four hours of the nine precious hours he had left to live that morning.

    It was only much later after the shock of his death began to wane that we asked ourselves: “What the hell were his oncologists thinking?

    • I can hear the hurt, and am very sorry this happened to your dad and your family. How different it may have been if hospice had been suggested early on.

      I just learned that hospice care is free, they can come to your home, they can provide care for up to a year before re-evaluating the situation.

      Which medical specialist’s job description should provide hospice care information to you? The specialists are consumed with providing their specialized care to the utmost degree. Fix it at all costs!

      Leaving no one in charge of looking into what is happening with the family, what is happening to the lives inside and outside of the clinical care room.

      Society has to back off legal pursuit of docs who didn’t do the absolute right thing, or provide all possible care. Let’s take some of the blame, but let’s also insist on patient advocates specializing in whole care for us. All care, not just specialized disease treatments.

      • I’m sorry to say but your hospice information is incorrect. Either you misheard, were misinformed or misled.

        Hospice enrollment is made up of two 90-day certification periods and an unlimited number of 60-day periods after those. The first 90-day period must be certified in writing by both the hospice medical director and the patient’s chosen attending physician or another physician outside of the hospice. They must agree that the normal course of the patient’s condition would result in the patient’s death within six months or less. The second 90-day period would be certified by the hospice medical director alone, committed to writing and submitted to Medicare.

        Before a third (now 60-day) enrollment period begins and for every subsequent 60-day period, the hospice medical director or hospice physician must submit written re-certification as before but now must include a documented face to face visit with each continuing patient.

        Additionally, all hospices must conduct a complete patient assessment within 72 hours of enrollment which will be used to develop the Plan of Care (POC) and the patient’s baseline health status. This assessment and every (no less frequent than every 15 days) Inter-disciplinary Team (IDT) assessment updates are to be used to support (or not) the patient’s terminal status and continued hospice eligibility.

        This is far different from the one year re-eval that you heard.

        As to cost, hospice is not free. As a Medicare benefit it is paid for with taxpayer dollars. As future hospice costs rise so likely will be taxes to pay for them. Insurance paid hospice is paid with subscriber dollars and premiums will rise as payouts increase.

        A more accurate statement might be that hospice may not require any reimbursement from the patient but there could be co-pays or uncovered expenses depending on individual circumstances. All hospices are required to detail out any costs to the patient up front and before enrollment. If they don’t, you should ask.

        “Which medical specialist’s job description should provide hospice care information to you?” is not a statement but I’d like to comment on it anyway.

        In my opinion the answer would be NONE.

        With the advent of the Nurse Navigator position and out of anyone in a medical position, these individuals would most likely be the ones to provide hospice information other than the MOST appropriate individuals…the hospice staff themselves. Again, in my opinion, it is irresponsible and inappropriate to have curative care doctors and specialists counsel patients on hospice care essentially doing the “heavy lifting” and difficult discussion those hospices should be doing themselves then turn the now-reeling patient over to hospice who can say all the “nice” comforting things they can provide all the while downplaying death with comments like “hospice is about life” and “quality of life” and such. Hospices are continually advocating passing legislation to force doctors to have extensive such end-of-life discussions with patients but this would really just help the hospices market their services (which Medicare currently likes as it claims to save them a small amount of money per patient over traditional care).

        It also helps protect the hospice from being perceived or accused of soliciting referrals in violation of anti-kickback legislation or Stark laws and, as I said, makes it easier overall on the hospice to sign people up . Seriously, most people don’t question their doctor’s advice. Even though this wouldn’t be advice to enroll in hospice, most patients will perceive it as such and assume that the doctor thinks it’s best for them just because they talk about it. Then when the hospice enrollment (marketing) agent skirts every use of death or dying in the conversation, enlisting enrollees becomes much easier. The unfortunate realities are threefold:

        1. You are not expected to survive hospice
        2. If you do improve, you will likely be discharged from hospice whether you feel that’s appropriate or not…If you are on Medicare you can request an expedited 3 day review of your objection through a Quality Improvement Organization (QIO) but hospices succeeded in petitioning CMS to not require them to disclose this to patients (as is req’d of nursing homes, hospitals and others).
        3. Hospice exploded on the scene only when Medicare started paying for it in the ‘80s as a savings device and it was seen as a profitable business model, not because of any altruistic desire to help the dying. Also commonly referred to by some mostly non-profit hospices and the media as the rise of the “evil” for-profit hospice.

        The patient now already having been told the basic drawbacks of hospice care (no curative care or any treatment associated with the terminal condition performed by anyone other than the hospice) is kind of like “Bad Cop” (doctor), “Good Cop” (hospice). Even worse, most doctors know very little about hospice and its procedures and very little about the actual hospices in their area. If they do know about them (and have an opinion about their quality), hospices adamantly oppose doctors recommending any particular hospice (which they’re not supposed to do anyway). I don’t see where any direct benefit exists to the patient for those same patients to have lengthy discussions surrounding hospice with their curative care physicians.

        On a personal note, your second line particularly hit home. You said, “How different it may have been if hospice had been suggested early on.”

        My wife and I were involved with a hospice for 34 days. During that time, my now fully quadriplegic wife with both legs separated from her hips eaten through by cancer, her spine cracked into 3 pieces, tumors visibly growing out of her back, 30+ tumors inside her lungs and tumor masses on the outside of her right lung was extorted, coerced and terrorized to force her to sign a new but illegal contract (a physical impossibility) surrendering all her civil rights and authority over her personal body to the hospice (our existing contract having been illegally nullified). The hospice requiring her to be rolled and held on her side (which would and did end in respiratory arrest) while refusing any and all care until signing the contract was complete even refusing to relief the excruciatingly painful and life threatening edema of her entire left arm due to a backed up chemo port the hospice refused to flush. It was further mandated that she, her mother nor I would object to anything the hospice nurse wanted to do or face immediate expulsion and removal of all equipment provided including the bed upon which she lay. We were given 1 hour to decide while the hospice nurse and social worker sat in our bedroom staring at us. At the end of that hour we were told discharge and equipment removal would be carried out. The hospice granted us a 24 hour extension which they backed down on further, but still refused to provide any comfort care, when I contacted the CMS headquarters in Washington D.C., San Francisco Region 9 field office and the National Hospice and Palliative Care Organization in Virginia. Unfortunately, not one of them would intercede on our behalf.

        At the end of 48 hours of pain, despair and tears, my wife agreed to be rolled. We were told that if any of us objected “even in the slightest” hospice management’s instructions to staff were to “drop her no matter what you are doing and walk out.”

        My wife was rolled. She went into respiratory arrest which the hospice claimed to be dyspnea and common amongst the dying. I asked my wife after hospice had left…the room air concentrator not helping at all…if she wanted to go to the hospital. She gasped out that she did. She lingered there for a time, went comatose and died as much in my arms as I could possibly hold her. Just she and I…safe from hospice as I had asked the hospital nursing staff to please keep them away from us and having explained what they’d done that brought us here.

        The hospice would later petition the hospital for custody over her remains. They tried to block the funeral home my wife had chosen, and her father had called that morning, from taking her body away. I don’t know why…don’t know that I want to know.

        After all this, the hospice’s hospital liaison RN approached me and had the audacity to say, “If only we had gotten to her sooner, how much more we could have done.”

        I shudder to think.

        Your second line reminded of that moment. How I held it together, I have no idea.

        • Oh wow. I am so sorry, D. Someya Reed, the hurt you and your wife endured. How disgusting. Shameful. What has our medical community become? If I read your experience correctly, every aspect of your horrific experience was not about care, or treatment, or options. Simply dollars and cents, but without sense at all. I cannot begin to tell you how sorry I am for your loss, and the pain this experience left you with. Please take care of yourself, try to find peace if possible.

          • I think this is the point where my words come one at a time in line. Please see my response at the end.

  2. I hope more oncologists will evolve to embrace presenting the patient with all of the choices they have, be it treatment of palliative care – all along their cancer journey. I recently had difficult interactions with a veterinary oncologist over the treatment options for a pet. The oncologist would only give present me with the gold standard of care and nothing else. I discontinued our relationship to manage the pet’s care with only the primary vet. And as supportive as he was, in my pets last days and hours, we never had a discussion about death. And I was ready for that reality – as much as one can get ready.
    Thank you again for this thoughtful post.

  3. Excellent post. I often think about our aunt, who was diagnosed with metastatic lung cancer after a heart attack. She decided against treatment and chose to live the rest of her life as best she could. She traveled to several places she had always wanted to see, puttered about her home, spent time with her family, especially her granddaughter, and enjoyed hosting visitors to her part of Colorado. When it was time, she entered a hospice and died less than a month later. I would hope to go like that.

    • How beautiful. A life well lived.

  4. Physicians who paint a “blue sky” picture for patients are doing them a great disservice. Patients deserve at least the big picture:

    Tell patients, surgery is a diagnostic procedure-part of the complete pathology report. NOT a cure all.

    Tell them to visit their oncologist before any surgery is performed.

    Tell them to wait until margins are clear, before chemo/radiation and reconstruction are attempted.

    Tell them why. That chemo, radiation can cause serious complications and affect quality of survival life.

    Take time with each of them, use the risk/benefit ratio on every step with each new piece of data.

    Educate surgeons, usually the first to see cancer patients. Surgeons are not oncologists, they should defer to an oncologist before the scalpel is raised. Patients must see an oncologist first—NOT last.

  5. The excellent article ‘How Doctors die’ puts this very well if you haven’t read it do Google it. I am ok at the moment but I am as certain as I can be that I will not go down the road of extensive treatment that has no long term potential. I have watched three friends do that and they all had miserable deaths after treatment that did them no good at all. The few I know who refused lived longer than expected with a far better quality of life.

    • Awesome article Cherie, thanks for posting this. It proves to me that disease treatment is not always the best kind of life support care for the patient.
      We’ve been lead to believe medicine is capable of much more than it truly is. Doctors already know their limitations.

  6. Thank you….Dr. Salwitz…this is a “first” …..I’ve never heard this choice from a doctor … And appreciated the comments that followed… We just need to know there are other choices besides chemo/radiation/surgery !

    • Penny, I agree with you. Dr. S’s article is the “first” I understood that treatment options can be delayed or modified.

      I wish I had gotten a second opinion on such important decisions, instead of the sound bites from each specialist provided in succession, after something more was identified.

      I would have liked to have a bigger picture provided by an advocate who might put some variables into the equation. Does this make sense?

  7. I don’t know what it’s like now on the East Coast, I used to live and work that direction, but here on the West Coast, I’ve had no problem with doctors being brutally to belligerently forthcoming.

    These ranged from an oncologist I’ve told you about previously that after an exhaustively detailed (and I’m not complaining) discussion of chemotherapy options he then tried to seal the deal and relieve any concerns by telling my wife that she likely wouldn’t survive the chemo regimen he recommended (he said a 5% chance was generous) but to take solace in knowing how much he expected he would learn from her death. As if he expected her to say, “Oh if you put it that way, sure sign me up!”

    We went to see a radiologist (same facility, different location) as both chemo and radiation had been suggested. She spent nearly an hour pinning my wife in her seat which had arms the doctor held onto while practically spitting in her face that she was going to die if she didn’t do chemo. You didn’t read that incorrectly…she was a radiologist in a different building on a different day. She only talked about chemo. My wife was in tears much of the time. I tried to intercede (non-confrontationally) by asking the doctor to answer the list of questions we’d prepared. She told me to “Sit down and shut up!” Adding, “Your questions are unimportant.” Then “Dr. Nostradamus” returned to telling my wife exactly “how” she would die.

    This was not “Joe-Bob’s Cancer Center.” This was a nationally (no, internationally) known and respected medical facility. This may have had something to do with the fact that I came to the table with some medical background. Not only the nurses thought I was a doctor by the way I filled out forms (they said) but even the doctors thought I was a doctor. My wife was a chemist and toxicologist. Her photographic memory for this stuff was most impressive. But neither should elicit this kind of treatment.

    Maybe you can’t say this but I can. Fewer physicians are finding themselves able to practice as an independent. Many (most?) are joining hospitals to conglomerates. Now if you were prescribing mostly comfort care in the form of cheap painkillers and yoga therapy to your patients, it wouldn’t be long before management and finance got together and questioned why Salwitz is not bringing in his share of the revenue that he could be with MRIs, PET & CT scans, lab tests, and pricey, repetitive chemo drug treatments, to name a few. You know where this would lead.

    If patients do not realistically understand what treatments can or cannot do, denial is not the issue. Denial would be if they are walking out while questioning your diagnostic abilities by telling you such things as you couldn’t diagnose your way out of a paper bag. Again, not happening. The burden for understanding is on the doctor to explain to the patient at the level of comprehension and language skills for that patient. The problem there is you (doctors in general) have what…six minutes per patient on a good day?

    Still, I’ve had no problem with West Coast doctors offering NO as an option. The problem I’ve had is their reaction when you CHOOSE that NO option they just offered.

    There is no shame to doctor or patient for a patient to choose (without coercion) to not do anything if that is what they want. Go ahead and call it “giving up.” IT IS! It’s giving up on the pursuit of a cure. It could also be called hospice. In reality, that’s what you are doing when you choose hospice. You are giving up on the pursuit of a cure. Medicare requires it. You can say all the nicey-nice “redirecting hope” comments and “hospice is about life, not death” that you want. It doesn’t change the facts.

    Sometimes NO means just that I’ve had enough, I’m not seeing any benefits and I’d rather spend less time feeling mostly OK rather than a little more time always feeling sick, weak and being bald.

    And there have been studies that have shown that lifespan is the same or longer without treatment (in certain circumstances). Equally some have shown an improved quality of life. Is this true for all…NO! For some…YES! Should the doctor get to decide…NO!!

    Ultimately, it’s the patient choice pure and simple. Just as it should be.

  8. @Kathryn Zusmanis (from above)…

    Thank you for your kind feelings for us but my (even ongoing) suffering pales in comparison to what my wife suffered. Imagine being totally paralyzed, in pain and having someone hold the instrument of your relief (a chemo port flushing kit) over your head (literally) while telling you all you have to do to get that relief is sign some papers (something you physically cannot do even if you wanted) which state that you must accept (without complaint of any kind) anything they choose to do to you…until you die. It’s was more horrific than the worst horror movie, worst war movie I’d ever seen. And it was real!

    There is no peace to be had for me just as there can be none for her. The snippets of comfort I may get will come from educating the public about hospice, dispelling the REAL myths of hospice and explaining how to protect oneself and/or one’s loved ones from any rogue hospices or rogue hospice employees. Even if from this day forward there was to be only one bad hospice experience ever again (which we all know will not be true), I hope to be there (or that my words will have been heard) to help that one person and that one family NOT experience what we did.

    It was one of my wife’s dying wishes of me to do all in my power to make sure that what happened to her in hospice doesn’t happen to someone else. All the while, though, I can never stop hearing her gasping for air and begging to be let down as she was held on her side and her tumor filled lungs compressed and congealed ending in respiratory arrest. I will hear it multiple times, every day for the rest of my life.

    It was not for money but rather the hospice’s fear of losing money that all this was done. They felt she “might” be too costly. They felt we “might” sue them for their having cut open one of her exposed tumors on her back with their rough handling in transporting her home. They might even have felt that they really didn’t have the skills necessary to truly provide even basic, adequate care for someone in her medical condition(s) but they’d accepted anyway. Medicare’s COPs rules are very specific on this. CFR Title 42, section 418.26 begins with the statement that no patient once accepted into hospice can be discharged because they are either too costly or too time consuming (paraphrased). But there are, unfortunately, other ways to make you so miserable that you will accept the hospice’s urging (also against COPs) to “voluntarily” rescind hospice. If you don’t…then you might get what happened to us. It was no different than torture enacted during war. It was NOT compassion of any kind.

    Even if my wife had not asked me to do this selfless thing for people she will never meet, I hope that I would have been man enough to do it anyway. I certainly won’t back down no matter how long it takes, how difficult it gets, how long people resist accepting the truth (about some, not all hospices), how much fear in politicians I must overcome to spur them to action or how much this particular hospice continues to threaten me even though we both know what really happened.

    To bring this (sort of) back on point, hospice is what has been historically associated with “giving up.” Palliative care has not. Though I’ve found no prognostic benefit of palliative care physicians over curative care ones as expressed above, palliative care methods are managing the chronic condition and in so doing may “cut the body a break” to help it heal itself. Maybe, no promises. And palliative care has no restriction that you must give up all curative care as does hospice.

    There is a palliative component in every curative measure. I long for the day when every doctor realizes that he/she is both a palliative and curative physician at the same time. “Take two aspirin and call me in the morning”…palliative care (and prognosis that you’ll likely feel better in the morning). Think about it.

  9. I had no idea this could happen to anyone in this day and age. I cannot begin to comprehend it. I can only express my sincerest empathy, compassion for you, and hope that you will find peace somehow.

  10. Thank you for a great article. As much as I seek to educate my patients about these issues and provide questions to help them navigate decision-making, the role of the physician in this process is critical. For those oncologists and other specialist who have difficulty bringing this up, do you think they would make use of a simple tool that the patients and family can complete prior to the visit to open up the difficult conversations? I’d love to work with those to create such a tool.
    Thank you for your honest and compassionate work with those you serve.

  11. I want to ensure that people know such atrocities can and do occur but most importantly how to avoid being the victim of one. I want them to know, if they find themselves victimized, what can be done to get help NOW! Even the best of hospices (or any medical business entity) will not tell you these things if they continuously claim that such negative actions could not happen with THEIR people. Of course they can. Or those hospices who participate in discrediting those few, usually surviving family members, who do come forward to tell their stories in order to seek change in the system. How can a hospice representative at any level so often claim that something didn’t happen because:

    a. The family or patient did not have a medical degree so neither could possibly have understood what was “really” happening

    b. The family or patient were grieving, pre-grieving or anticipatory grieving so their judgement and view of events were “clouded”

    All the while and almost always these statements coming from someone who NEVER was even there.

    How does it “honor” the memory of the dead, as hospices routinely do each year, if they claim that those whose deaths are less than “dignified” should be dismissed as “rare” and/or anecdotal?” The “dignified” deaths, as defined by that particular author, usually a hospice nurse, are the only ones you’ll read about in mass-market hospice memoir-style books. How many times I have been tolde either “I’ve never heard anything bad about that hospice” or “I’ve heard more good than bad about that hospice.”

    Is true informed consent and legal protection of the patient rights of the dying (not just the patient rights of the healthy or curable) really too much to ask? My State does not even have a legally enforceable Hospice Patient Bill of Rights. So the one put out by the hospice industry and quoted (sometimes misquoted to the hospice’s benefit but the entity that created it didn’t care…I called them) is nothing more than “suggestions.” My State has no fines of any type specific to hospice for any transgression by any hospice. Hospitals do…nursing homes do…SNFs do…why not hospice?

    How many of you know what protections (or lack of) your State offers you should you or someone you care about enroll in hospice? How many of you know how to help them if their rights or very lives are in immediate jeopardy? I didn’t but it’s a feeling I will NEVER experience again nor want anyone to experience who hasn’t.

    I’ve said more than enough. I hope even one person reading this will take it to heart. That’s all I can ask. I have to go attend a Medicare function where I plan to ask, “Why after 35 years do you still have neither substantive patient protections for the dying nor even guidelines for enactment of such protections by the 50 States to whom you abdicated that responsibility?”

    Thank you for your kind words.

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