Is false hope malpractice?

All too fortunate to have a medical team that does not sugar coat and helps me and my family through the hard choices.

One of the cruelest oncologists I met sugar-coated things. He assured me that my face bones would be cut in one surgery-he told me that I'd be just fine. I knew that he absolutely was lying when he told me, 71 years old, that I'd look glamorous with an eye patch. Come on- even Moshe Dayan didn't look exotic with an eye patch-only Johnny Depp looks exotic with an eye patch. My biker grandson went up with me and scared the truth out of the twit. Like a series of surgeries-at least a year before I got a prosthetic face, etc. Is there a difference between 'incurable' and 'terminal'? Unless I die from something else, this will kill me, unless it is even more atypical than they thought, and I stay in remission. Meanwhile, I did a dump run 2 weeks ago- sat down to many meals-which I helped cook, walk my 100 lb coonhounds and clean the yard up after them, had arguments with my family-that's part of living too, but mostly we have hugs. If my face was cut out, I couldn't do this, any of this. My son is a disabled vet with PTSD. His CG cutter turned upside down. When the cutter finally righted itself, he went into the dark engine room for his emergency duty.station. As he worked in the dark to connect steam pipes to the turbine, he kept tripping on a pile of rags. He tried to kick them out of the way. When the lights came on, he was standing in the rib cage of his best friend-the steam blasted the flesh off of the bones. He can't stand to see a cut or broken glass. I like to know the worst case scenario, then anything better than the worst is good, but I'm ready for the worst. I don't know why anybody would expect me want to live without my facial bones, hounds, and family. I immediately got a final directive that wants all tubes pulled at the end of 3 days. I felt like I had appointments with Dr. Mengele, and I escaped Auschwitz. I like my new oncologist, but I'm very suspicious of everybody else-nurses, clerks, counselors, especially the nurse navigators. They all lied by omission and wouldn't help me to get a different doctor. They made me fill out my final directive multiple times over the tube issue. I kept asking them if this is not a legal option-why is this listed as an option?

Dr. Salwitz: I so appreciate your writing and so admire your compassion and courage. This latest piece is yet another compelling example of both. And because I agree so strongly with you (from the perspective of a terminally ill/dying patient's family), it prompts me to share something I wrote (but never published) in November, national palliative and hospice care month. See below. Perhaps it will resonate with you and/or other readers of your important blog. My mother's oncologist was honest about the inability to cure but essentially silent on the potential of palliative care (as a medical sub-specialty unto itself) and hospice to support her quality-of-life goals for however much time remained. We (the family) took control of managing these goals ourselves and managed to have an incredibly joy-filled last year with my mother. I wish others could be so fortunate. And I wish the silence about palliative care and hospice would be broken. Thank you for your advocacy. I'm doing what little I can to amplify your message. ~~~~~~~~~ I was with my mother and father when the oncologist told Mom the recommended course of treatment for lung cancer that had metastasized to her brain was “palliative, not curative.” Because we are a medical family (my father is a radiologist), we understood what the word “palliative” meant in this context, and there was no misunderstanding the meaning of “not curative.” The cancer was terminal, and it was going to kill my mother. The treatment would relieve symptoms, but it would not cure the disease. Before we left the oncologist’s office, appointments for initial radiation therapy and chemotherapy sessions were made, and the overall course of treatments had been explained. But, in these anxiety-inducing and grief-filled moments when our family’s journey through incurable, terminal disease was beginning, not a word was said about the full spectrum and promise of palliative care or about the gift hospice would represent when the journey was coming to an end. With the clarity of hindsight, I know now that this was a big missed opportunity. My mother should have been referred for a palliative care consultation immediately after her diagnosis. Palliative care – to address not only her physical symptoms but also her emotional needs and goals, as well as those of her family – could have begun on day one, and it would have made a tremendous difference. Throughout her illness, my mother suffered far more from emotional distress over the impact of her illness and death on the family she didn’t want to leave than she suffered from physical pain. We also should have been informed right away about hospice care as a compassionate end-of-life option so that we could plan and prepare rather than wonder or worry. Those who are seriously or terminally ill suffer existential pain that cannot be treated by chemo or radiation therapy, and their families suffer with them. Those who have experienced it know there is more to palliative care than treatment to relieve symptoms of disease. Families who are unaware of the holistic and compassionate goals of palliative care and hospice may not be allowed to reap their benefits. This saddens and upsets me. The time to talk about end-of-life options and preferences is not when life is ending. Yet far too often the conversation begins only then. Many patients and their families simply do not want to play the hand they’ve been dealt. Denying the reality of their diagnoses, terminally ill patients believe or are encouraged believe that if they “keep fighting” or try just one more medical intervention, they can beat the disease. For family members, keeping someone alive, or wishing a terminally ill loved one would continue the chemotherapy that is making her feel too drained to enjoy the time that remains, is often a very selfish decision. We desperately don’t want to lose our loved ones. I believe a bigger cause of the denial epidemic can be found in the medical community. Increasingly, physicians themselves are publicly acknowledging that too many doctors are still too reluctant to refer patients to hospice care even when they know the patient can’t be cured and faces death within six months. Because too many doctors still think of death or the inability to cure as a personal failure, too many deny dying patients and their families the chance to experience the full benefits and gifts of hospice. Because too few people know what hospice is, and too many believe it is something it isn’t, not enough are asking for it if their physicians don’t suggest it. Yes, it is difficult to accept mortality and talk about dying, but we must. The conversation needs to start much sooner. And it needs to be initiated by physicians who muster the courage and compassion to be forthcoming and honest. - written (on 11/12/13) by Linda Campanella, author of When All That’s Left of Me Is Love (2011), an intimate journey through terminal illness and an inspiring story of love and loss, family and faith, hope and hospice, grief and gratitude

The surgeon who first dealt with my own cancer gave me one reassuring misdiagnoses after another. First: that it was a perfectly benign cyst and could come out at my convenience. Second: that it was basal cell, and, even though he had "cut close to the margin" he recommended no followup. The second diagnosis was wrong too, as was the next path report (squamous ) a few months later after it spread. l was 21 when I finally became the 35th case of adnexal carcinoma to be diagnosed worldwide, and that has changed forever how I hear statements such as, "But that would be very unusual..." And, in fact, I have several other unusual conditions, and I have them 100%. What I most appreciated about Tom Frei and the others at Dana Farber (among the best in the world) is that they didn't know exactly what would happen with me and they told me so. They told me that they recommended a given course, based on analogy, and what they did know, based on the progression of previous cases, but that really was all they had. And I truly cherish that honesty. Sadly, I have come to learn that it still is all too rare. And about that there is far too little outrage among docs. Just take a look at Kevin MD.

Imagine a world where the oncologist could say to you - this is my recommended protocol. This is what I would like to try. I don't know exactly how you will respond. But this is what I believe will work best for you and your cancer. We will work together to heal you or make you comfortable. Imagine if an oncologist could have that much compassion and that much humility.

I agree that an oncologist should be clear in giving a patient an accurate assessment of their condition however I also believe this is only possible if the oncologist is a caring and sensitive person who is a good communicator and is willing to take the time needed to insure the information is passed and check that it is received. This individual is hard to find. When we started dealing with my wife's cancer, 4 years ago, we initially spoke to 3 doctors and found a wide range of difference in their communication skills. We finally chose Dr. Salwitz and have been more that satisfied with our choice.

A physician's communication skills must include knowing when & what to speak as well as when to listen. It's not an easy thing and not everyone is qualified. To find the right match for each of us, we have to do the same...speak up as well as listen. Just as for physicians, we also need to be aware of non-verbal cues. If you do this, you'll know if and when you've found the right match. I've never met Dr. Salwitz but I did just hear him recently on an RWJUH Medical Minute on YouTube. No, he didn't sound anything like the voice I heard in my head along with his picture. Even though I didn't agree with all he was saying there or sometimes in this very blog, I feel comfortable on both my wife's behalf and mine that we would have been very pleased had he been our oncologist. We, too, went through a couple of other oncologists before matching with our Dr. Alali. The first oncologist, my wife rejected after he told her that his treatment program would likely kill her but that she should consider all that he would learn from her death (and unusual variety of cancer...she had become known as the "darling of the tumor board"). He followed this up with a story of how he ruined a patient's quality of life (he said it was in "negative numbers" after his recommended regimen) but he would "do it all over again" and "not change a thing" without any explanation as to why not. As fate would have it, he also turned out to be (and still is) the Medical Director of the hospice we ended up with and the bitterness of previous rejection and glee in doling out retribution was apparent in his voice and in the way he emphasized certain words when he told me (via phone) that he knew "EXACTLY" who I was, what his people were doing (to her) and that he had "authorized all of it." Conflict of interest doesn't even begin to describe it. If only I'd known then what I know now, I would have immediately been on the phone to CMS (both Wash. D.C. and regional offices), APS, CDPH L&C, NHPCO, CHAPCA, County Ombudsman, County D.A., City & County Senior and Dependent Adult Commissions, TV news, newspapers...everyone having any stake in abuse prevention. It wouldn't have saved her from cancer's grip but it would surely have made the hospice unable to do as they did. Understand, that any bad in hospice occurs in our homes or other places where no one hears, or is likely to hear, about it unless we speak out and as it's occurring. My heart and my gratitude will always be with Dr. Alali. He made my wife feel not only special in every encounter (and I'm not embellishing a bit here) but also made her always feel that she "mattered." This is the hallmark of a great physician and a wonderful human being. From all I've seen, heard and read since joining this blog, I believe that Dr. Salwitz belongs in this category, as well.

To Kathleen Denny re: your post above from 1/1/14. I’ve written many responses since your post but all have bloomed to monstrous proportions as I attempt to explain every detail. It gets neither easier nor shorter with each attempted revision. But “what happened” to my wife is not as important as “that it happened,” that it is “allowed to continue to happen” and that most people are “afraid to believe that it ever happened or can happen again.” I have an answer to your question of what the hospice did but please bear with me for a moment. I propose the following with Dr. Salwitz’s cooperation. I will write below the briefest description I can of the circumstances of my wife’s 38 days of hospice “care.” If you’d like to know more, at any level of detail, I offer you my email address (via Dr. Salwitz and his agreement). You merely need ask him through this blog’s contact page. I will share as much as you’d care to read. I will not share with you, the name of the hospice we had or any of its staff members. My personal beliefs aside, this hospice is not my target. There are some actions, decisions and mistakes you can never take back and never fix. Nothing and no one can change anything for my wife now. However, there are those who will do whatever it takes to see it “swept under the rug.” This I will never allow and it was her wish, as well. So, the education of the public, the removal of the industry’s techniques to shelter patient abuses from exposure, eliminate the discrediting of those who report abuses and opening the “blind eye” of the government are my only goals. Hospice has no better or worse record of abuses than hospitals, nursing homes, SNF’s or any other medical facility or practice. To believe otherwise is as preposterous as it was to believe that nursing homes were like sending mom & dad on a vacation for the rest of their lives. But, all hospices do have a far better environment in which to suppress abuses (physical, emotional, financial, etc. if they choose to do so), through the privacy and seclusion of our own homes (your word against theirs), the more common advanced age and frequently impaired cognitive abilities of its primary participants and their spouses, the manipulation of the grief of the families (through claims of clouded judgment and lack of medical knowledge) and, for all of us, our fear of death and fear to even talk about it. So what happened to my wife in hospice? She was enrolled, I as her 24/7 caregiver, with all the usual promises…”you’re the boss”…”we’re simply here to support you”…”your attending physician will be the most important person on your team”…”we’ll provide all the medical equipment and supplies you need”…”if you need help off-hours just call and we’ll send someone right out, no one is further than 1 hour away”…”if you have a problem let us know and we’ll work to resolve it to conclusion, keeping you informed at all times”…etc, etc. Reality? The hospice staff injured my wife during transfer from hospital to home. Never acknowledged or documented it in her medical file. When I informed hospice team of her hyper-sensitivity to most medications and fatal allergies to certain meds I was told, “Well, you’re both going to have to get over that because you know she’s going to die anyway.” One of these was lorazepam which caused complete respiratory failure when my wife was once given a single small dose; yet, a hospice nurse would later argue that it should be administered to her and right after the “suggestion” asked that I leave him (the nurse) alone with her. This never made the medical file nor did any mention of her sensitivity to meds or fatal allergies. For durable medical equipment we received filthy, food-covered, broken or electrically unsafe equipment such as a pump with exposed bare wiring, a mattress with holes I plugged with towels to make usable only to be replaced (upon complaint and days later) with one reeking of urine with a roughly body-shaped brown, crusty stain of unknown origin. These never made the medical file. Durable medical equipment we NEVER got…a low air loss mattress (mandated by attending physician and he insisted be placed in the contract but we were later told by hospice’s DME provider that it cost $800/mo and needed special permission/paperwork), a commode sling for the hoyer lift (DME provider didn’t even know what that was and hospice said I could deal with their DME home office to get one if I wanted but they would not assist), a simple neck brace because the hospice claimed they had to send out a specially trained individual to measure my wife’s neck and neither the Team Lead nurse nor home health aide were qualified for this and they never found such an individual). None of this made the medical file. My wife’s assigned nurse was replaced after (unknown to us) she wrote in her third day (2nd visit) report that she was requesting a case load reduction to allow her the time to properly care for my wife’s “complex case.” She never showed up for the next morning’s visit or ever again. When I called the nursing supervisor the next day, I was told that she had to step down due to a personal medical condition but they were replacing her with their “kindest, gentlest, most compassionate, best nurse” (a male). I explained how my wife had a fear of male nurses due to having been attacked by a rogue one during an earlier hospital stay. The supervisor told me that they had specially picked this nurse for her and to try him out but if for any reason, at any time she felt uncomfortable, to call and he would be replaced immediately. It wasn’t a problem for the next 12 days because he didn’t show up. He called twice but refused to say when he would come out and claimed that if we didn’t have a specific need for him, he didn’t need to come. When I called the 10th day of his 12 day no-show, the nursing supervisor chewed me out and said that we were jeopardizing their license because CMS mandated nursing visits a minimum of 1 every 7 days (not true) but she would “let it slide this time but don’t let it happen again.” Odd until I found that this “best” nurse was only reporting in the medical file that I repeatedly refused him access to my wife. Why wouldn’t the supervisor ask me why (according to the male nurse’s reports) I wouldn’t let him in our home? In all, this male nurse visited my wife 2 times in the first 28 days of hospice “care.” To be fair, the hospice did not work weekends or holidays (take that as you will) and he called once each week during weeks 3 & 4 for an unannounced visit but refused to come when I told him he could do anything else he needed but my wife did not want him to roll her on her side. This may seem a small thing until you understand that my wife was a metastatic breast cancer patient with over 15 tumor masses in each of her lungs (only because the radiologist stopped counting at 15 each), her right lung encased in another tumor mass, both her legs completely severed from her cancer ridden hips at each femoral neck , a tumor mass visibly protruding from her spine at the T12 vertebrae (which had painfully ruptured through and compressed her spinal cord leaving her paraplegic upon hospice enrollment) and another at the C7 vertebrae which was currently in the process of painfully rupturing and compressing her spinal cord again (leaving her the predicted quadriplegic) and was also bonded by tumor mass to her scapula. To top it off, she also had Cushing’s disease (known as camel or buffalo hump) and minor tumor indication in virtually every other bony area except her head and neck. She was in full possession of her cognitive abilities with her photographic memory intact while she watched her quadriplegic body rot in her bed. The cancer left her paralyzed but not her pain receptors. She could feel all pain. Rolling her on her side, early on, restricted her breathing nearly completely and she & I worked out a way, using 12 bed pillows and incremental movements, to almost painlessly raise her enough that I could care & clean her back (to avoid bed sores and sepsis). The hospice male nurse claimed I couldn’t possibly know this and that this would take too much of his time. He later asked me where I got my medical degree when I asked what training he had to ensure that rolling a patient as compromised as one in my wife’s condition was either safe or advisable. His answer: “I can drug her to the point that she won’t know what I’m doing and I can get my job done.” He later stormed out of our house and I requested he be replaced (as we were told we could). The hospice never acknowledged my wife’s paralysis and never mentioned it in the medical file or the Plan of Care. Oh yes, the Plan of Care…we asked for it, repeatedly. Repeatedly, we were told it was a “living document and could change at any time.” We NEVER even saw it let alone were able to read it but the hospice made sure to tell us we weren’t letting them follow it. My wife had a port-a-cath (chemo port) installed which even her doctors (the same ones that hospices claim are ignorant of palliative methods and controlling pain) said it was too risky and needless suffering for her to have it removed. They said she needed pure comfort care and that the hospice should regularly flush her port. Her left arm retained a minor amount of fluid which I and her mom could massage out. Then her arm ballooned over twice its size and massaging became less effective till eventually her arm went rock-hard, extremely painful, and began to smell. I called the hospice and they agreed to do the first port flush the Tuesday following the Friday request for new nurse. I confirmed it again on Monday thinking they might not have a replacement nurse available. They did. She showed up, social worker in tow and the same one who suggested to my wife that she might “consider leaving a little something to the hospice” in her will. But rather than proceeding, the nurse said she needed to talk to us before flushing the port and relieving my wife’s pain. Long story short, we were told by this nurse, that she had “been ordered by the medical director, executive director and nursing director of this hospice not to lift a finger to help you in any way whatsoever unless and until you sign this new contract in our presence and before we leave this room. If you do not sign, either of you, you will be immediately discharged and all our equipment will be removed from your home. If you do sign and either of you, even in the slightest, refuse or interfere in any way with anything the nurse chooses to do, you will be immediately discharged and all our equipment will be removed from your home.” It was explained that they had another appointment so we were given 1 hour to decide to sign and told to start reading. I asked the obvious, “How can she sign anything as a quadriplegic?” only to have the nurse shrug her shoulders and tap her watch. They wouldn’t even say the words paralyzed or quadriplegic. However, the nurse did lean over my dying wife, in front of her mother and I, and say to her while holding the contract so she could see it, “All you have to do is sign this contract and I can make that pain go away.” I’ll let each reader form their own words to describe this scene. The contract claimed consequences for “failure to comply” (so much for hospice as a “supporting role”) and claimed authorization to take these actions by CMS Conditions of Participation, 2008, CA Code Title 22, and the CA Standards of Quality Hospice Care, 2003. I said that I’d signed enough contracts to know that if you quote legal authorization you must show the relevant passages. The nurse called their office and I was told if I came down to their hospice office that they would give me the passages. I came, leaving my wife in her mom’s care, I’m sure they didn’t expect me to come and, of course as no such passages exist, they didn’t give me anything. But the nursing director told me that she wasn’t going to waste her or her staff’s time and I could Google it. I claimed that what they were doing had to be illegal and certainly unethical and immoral. The nursing director stated in so many words that she did not accept patient refusals (thereby implying a hospice policy) but would concede to a single, take it or leave it contract change. She said, “Your wife can refuse anything my nurse asks her to do once in any 7 day period. When my nurse asks a 2nd time in the same 7 day period, your wife will comply and I DON’T CARE HOW MUCH PAIN SHE’S IN!” I walked out. The hospice’s medical director called me back as I left the hospice’s parking lot. I’d called for him on the way down at his oncology practice. This was the same oncologist that had told my wife that she should accept his likely fatal chemo regimen (over a year prior) because she should realize how much he stood to learn from her death (and she rejected him). When I said he might not remember us, he said, “I know exactly who you are, exactly what my people are doing and I authorized all of it.” I hung up. My wife hung on through the pain with the meds we had for the next 48 hours. The very next morning I called every agency I could find numbers for and spoke with CMS in Washington D.C. and San Francisco and the NHPCO in Virginia. The NHPCO told me that they were going to call the hospice and I should expect a call back. The NHPCO called back to say that I should be getting a call from the hospice. Several hours later I received a call from the hospice’s executive director. He told me, “We don’t need to get Medicare involved. I think we can work this out between us.” They still refused to flush my wife’s port or do anything unless we signed the (illegal) contract (under duress, as you can imagine). The second morning after presentation of the contract, my wife said that she couldn’t live this way any longer and to tell the hospice they could roll her. I reminded her that we both knew what that would do to her lungs, the pain from her spine now gone as the cancer finally took all feeling away. She said she didn’t care anymore and to let them do it as she couldn’t stand it anymore. I called the hospice, told them and they agreed to do the flush only after they rolled her on her side and as long as I did not interfere or object to anything otherwise they would simply walk out our door. The hospice nursing supervisor (social worker in tow) came around 1pm. She rolled my wife on her side and she immediately complained she couldn’t breathe. The nursing supervisor simply repeated that she should hang on while she sketched the shape of the radiation irritation to her tailbone, made notes and placed a non-sterile ruler directly on her abraded skin (so much for their claim of sepsis worry) then finally let her down and flushed the port. My wife’s breathing was ragged and labored which the nursing supervisor claimed to be dyspnea and was to be expected in terminal patients. She stated that everything looked good, that I was doing a good job and to keep it up. Finally, they left. My wife’s breathing got worse as the night progressed and I put her on the room air concentrator. It helped marginally. By morning she was gasping for every breath. I asked her if she wanted to go to the hospital. She gasped out that she couldn’t because the hospice made it clear that they had to approve it. I told her to tell me what she wanted to do and I would deal with the hospice. Her mom called 911. When she was safely en route to the hospital I called the hospice. There are only 2 reasons for a hospice patient to be removed to a medical facility. First is for caregiver respite which I didn’t need and second for symptoms that cannot be controlled at home. The hospice intake nurse at the hospital wanted to talk to me after my wife was stabilized. She told me that they were going to log this as “caregiver breakdown.” I refuted that and said I’d never agree (not that they were asking me to). They had to know that if they reported symptom control that they would have to explain how my wife was allowed to get to this stage. I can’t write anymore right now but suffice it to say that my wife lingered for a couple of days and died safely from hospice’s reach in the hospital. The hospice sent a nurse in an attempt to be present with the family at the hospital the day of her death. I don’t know why and probably really don’t want to know why. I have learned since that hospices don't get a stipend for the day of patient death. The hospital nurse on duty that morning came in and told me (as I stood beside my wife’s remains) that she now understood why I didn’t want hospice around. She said, “I’ve been talking to them for a minute and a half and I don’t want to talk to them anymore.” She explained that they wanted her to stall the funeral home (my wife had chosen) from reaching her first by either not telling them what room we were in or something else. She, of course, refused and said she hung up on them when the nurse was complaining that she’d have to explain it to her supervisor if she didn’t get there first. The duty nurse stated later, per a letter I received from the hospital, that two supervisors from the hospice called and insisted my wife’s remains not be released until they said so. Kathleen, if you want to know more please email me. I authorize Dr. Salwitz to give you my email address if you want it and he is willing to do so. I am sending this write-up to him and asking him to forward it to you, reading it if he wants. I’m going to try to post it but it may get rejected as too long.