Why we merged: The story of RCCA

On January 1, 2012, the major private practice Medical Oncology groups in the State of New Jersey, merged. We are 92 doctors, 32 nurse practitioners, 100 RNs, 700 staff, 26 locations with over 250,000 patients, together as one, and growing; Regional Cancer Care Associates (RCCA).  Difficult, painful, complex, expensive, bringing private docs together was like herding cats.  Why did we do it?  Because, doctors must control the future of medicine.

What is wrong with healthcare in the USA is clear.  Too much money, for too poor care, given with unfair and erratic results, all wrapped up in confusing, often worthless regulation, with MBAs and lawyers, as much as doctors, deciding what treatment will be ordered.  Federal government, state government, insurance companies, big pharma and myriad special interests combine to create not a healthcare system, but health chaos.  Whose fault is all of this?  Whom can you blame?  Doctors.

You can blame doctors because they hold the power of the “order.”  Nothing, absolutely nothing, in healthcare occurs unless somewhere a doctor orders it.  Not a pill, shot, surgery, admission, discharge, bill, hospital built, nursing home expanded or pharmacy torn down, ever occurs unless a doctor wrote a prescription.  Physicians have always had that final control, the doctor’s order.

Well, we screwed up.  We sat in our silos and thought that if we took care of our patients, studied hard, worked hard and stayed up nights, good things would follow.  We thought that medicine was about a patient, a family, and a doctor, sitting together, trying to heal.  Who knew that it was about money, power and planning?  We ignored populations, courts, budgets, corporate planning and government.  Trying to help, one patient at a time, we dropped the ball.  Our fault.  Mea Culpa.  But, no more.

We have come together because we believe that doctors, who attend the sick at the bedside, are the best advocates for the patient and family.  Physicians understand the science, the research, the practical application and the need.  We can balance treatment and costs as necessary and understand that sometimes not spending can actually improve results. We figure out, every day, how to apply technology and where the old fashioned ways, personal medicine, the touch of the hand, work best. We know how to educate other doctors and the providers of medical services and thus how to affect change to produce real results and not just frustration.  Most importantly, we rejoice when our patients heal, and mourn when they suffer.

Groups such as RCCA, physician organized, physician directed, are critical to the future of a viable healthcare system.  This means more than the simple business efficiencies of group management, negotiation and purchasing.  Together we can create guidelines, correct outliers, find healthy efficiencies, do vital research and from the one patient to the many, focus on better medicine.  By controlling and understanding costs, as well as the factors that optimize outcomes, such groups can take on financial risk, at the same time guarantee quality.

Insurance companies should be cash reserves for a rainy day, not try to define treatments and not be investment machines.  The government should support education, provide a safety net for those in need, and police criminal actors, not review the charts of individual patients or regulate care.  Drug companies should manufacture vital medicines, but stay out of the clinics.  Lawyers need to learn that confrontational litigation is a poor arbiter of results, and instead increase costs and undermine quality.

Doctors must direct and determine medical care.  This means understanding that in order to treat that one vital important irreplaceable person, on whom our stethoscope rests, we need to be involved in populations, courts, budgets, corporate planning and government.  We must move from the periphery, from the bedside, from professional isolation, to the core of America, to create and run an efficient healthcare system based on wellness, healing and not disease.  Because we love the patient, our friend and neighbor, we must “order” the future.  The person in the exam room, just behind that next door, demands it.


  • Liz
    Please please please talk in your new group about what you will do if a patient fires a doctor or a doctor fires a patient. Where I live the oncologists are in 2 massive groups (one with the teaching hospital and one with the other two hospitals) and the rest of the doctors (of all specialities) are in three massive groups (each centered around one of the three hospitals). What happens here is an extension of what went on in small practices. If either party fires the other and you are banned from that practice. The problem is that the practice is now zillions of doctors of all specialities. When everyone locally joined one of the three big groups (which also include all the specialists, not just oncologists) if either party fires someone you are banned from the ENTIRE group of of EVERYONE - ALL doctors of ALL specialities. This is a major problem and leaves some patients with NO doctor of any kind. Not knowing how this worked, I fired my first oncologist due to the fact that he was not keeping up and even when given the current guidelines wanted to ignore them (in my case he did not use rituxan even though it is a game changed and has been for years with non hodgkin's lymphoma). He also refused to cooperate with MD Anderson Cancer center. The other oncology group is out of network. I effectively have no local oncologist and my primary care doctor is left managing my cancer locally because I can't afford $12,500 out of pocket to use an out of network oncologist. Please please please do not ban fired patients or patients that fire an individual doctor from your entire group. They will then be stuck with inadequate or no health care. That is an unintended consequence of giant practices who then do not modify their rules to take into account the changing landscape of medical care and what transplanting rules that worked for everyone in practices of 2 and 6 doctors, because there were plenty of other choices, to ones with ALL, or almost all, the local doctors in one group.
  • Liz
    PS because I was using the two hospital group of oncologists (The teaching hospital is out of network) I also lost my primary care doctor in the process (because he was with one of those hospital groups - the oncology group was a a member of both - and so when I was fired from that practice in return for firing the oncologist I was then banned from either hospital group) and found I had exactly ONE practice of two doctors left that was in network and not affiliated with any group. Both doctors are close to retirement, are nice people but not very good, and they refused to join the big practices because they did not like the loss of control for themselves. I am very lucky they did not go with the flow or I'd be managing cancer with no doctor. To get chemo I had to appeal to the head of one of the hospitals to be allowed to have chemo in their in hospital chemo clinic as I am also banned from those hospitals as a result of the action of the oncology group. I am not sure what would have happened had I needed hospitalized during chemo. ALL of this because I fired the oncologist - and all I did actually was ask to change oncologists, was told this can't be done, I explained why I wanted to do this, and the next thing I know I get a letter in the mail telling me I can no longer use any doctor affiliated with either massive group nor the hospitals. PLEASE do not do this to patents in your large group.
  • alyce
    This is what basically happened to me. I couldn't get a diagnosis from the oncologist in the large group I was seeing. I was in a lot of pain and I wastold to work it out with my primary Doctor. I went to Moffitt Caner center in Tampa and they figured out what was wrong. I was told I didn't need to come back to my Original oncologist and there was no need for me to see another one in the large group.
  • Angela Evans
    Well said!!! Let's hope the so called "Affordable Care Act" doesn't destroy health care as we know it.
    • The word begins with c.
  • This is heartening news - I recommend that you read the comments above, and respond, though, in order to prevent any new silos from developing. Doctors AND THEIR PATIENTS should be driving all care decisions. If an individual doctor and an individual patient have a conflict, or a communication breakdown, what is the recourse for the patient? To ask to see another onco, and be labeled a "difficult patient" by the new onco? I'll repeat that this is heartening news. Just make sure you're not building another, bigger silo.
    • Mary
      I was labeled as difficult by the old doctor. It has his name and that I refused to follow his orders and the ACS standard care. My new doctor can't remove it, but he enters that I responded well to my choice of treatment, and that I'm intelligent with a good personality. Don't blame the new doctor-it's not always their fault.
      • Hello again..better to be difficult than easy...
  • Mary
    I live in New Mexico, and I was going to say almost the same thing. I know that people become mad at the world when they get a diagnosis of cancer, and that the treatments are often brutal and life changing. But in the end, a patient does have the right to look at options, hear everybody out, and have a professional tumor board, and has an oncologist that adheres to these things. An oncologist that does not brag that you have no other options because -HE RIGGED THE TUMOR BOARD AND GOT RID OF THE RADIOLOGISTS. I had a horrible, horrible doctor that changed the date of the tumor board to exclude the radiologists, and he bragged about it. He tried to get me to the state cancer clinic-where I had 3 friends commit suicide after treatment and it came back. I might add that the state unit is always being sued and losing. I had a social worker tell me that since I was unhappy to leave. I'm on Medicare, and this is part of my Senior Care plan-and they couldn't drop me. I hope that your group has a form that allows a patient to change oncologists once, and be able to choose their treatment or go into palliative care-if that's the choice. I'm lucky in several ways---They listened when I said-sue, and the radiation treatment worked. I had a choice of 2 types of surgery. One removing flesh and skin, and one of removing the bone too- right side of my face. I was told that the clinic would not allow the first surgery, even though this would be done by an experienced surgeon in the this system that promised good skin matching and face lift on the other side. The bone removal plan said that they couldn't match the skin, that the eye patch would compensate on the glamour end. That I couldn't see any other doctors. It took me over a month to get a new doctor. My primary care doctor stopped caring for me during this time. He had medical mumble jumble. The system did not stop caring for me. My thyroid went out just before radiation-and I was given a story about waiting until my body settled down. I caught strep and that wasn't cared for. In late July I finally found an elderly Urgent Care doctor that automatically ran a strep test, and I had acute strep. I made the required follow up with my PCP, who cancelled that appt. A Cardiologist stepped in and cut through the red tape and got me an internist for my PCP. He ran another strep test and it was positive too. We're working on the thyroid. Right now my goal is to regain my health status to what it was 2 weeks after the end of radiation treatment. That's sick. AND I'M LUCKY COMPARED TO THE 2 COMMENTATORS ABOVE.
  • Some Doctors with many other professionals included. Unfortunately I find no comfort in knowing this. Just a matter of human behavior....
  • Perhaps the doctor who lures patients he is sexually attracted to and is prosecuted for and continues to practice....NO doctor or group of doctors should be exclusively in charge..no supermen or gods here please...
  • Will you bully patients into submission, damage them as human beings and when uncooperative give them psych diagnosis and institutionalize them? That is an old way of doing things..totally unacceptable.
  • D Someya Reed
    As I read this I thought the same thing as Mighty Mouth...you could just be building a new and bigger silo. I would like to think that the patient is actually in the forefront of defining quality (by care/results) and determining practice survival (by the market). If no patients come or all leave, no more practice. But the system isn't set up for a market-driven solution so the patient is more of a pawn (or sometimes like a beach ball) between the major players. We can't solve this unless we make the most important person (the patient), the most important person...not just to doctors but to everyone, including the patients themselves. The point is...it's really all about care and healing not building empires, creating gods or megalomaniacs. On the flip side, how many patients are there who won't take the doctor-offered shot, pill, surgery, recommendation...? We also have a confidence issue likely based upon and fed from past experience. The patient says the doctors not giving me what I want...the doctor says the patient won't do as I ask...the insurer says the doctor is asking for too much...the government says all of you need to do it our way. Not to mention all the little steps in-between.
    • I cannot agree with you more here....good results should be the signature of good care.
      • D Someya Reed
        But this is not to say that all "good care" will have positive outcomes rather we have to consider the best possible outcomes and that is where it gets tricky. Even under the best of circumstance not everyone will be cured or even survive but many will and many more should. This is the dynamic between the doctor and patient...a two-way street...doctor wants to heal, patient wants to get better. Both have to do their best to make that happen. It doesn't work with only one. Both doctors and patients need to understand that. The good doctors, as Dr. Salwitz states, take the full burden on themselves... "You can blame doctors because they hold the power of the “order.” Nothing, absolutely nothing, in healthcare occurs unless somewhere a doctor orders it." This may be fundamentally true (for orders) but the patient also has power as well as blame. We can't let doctors off the hook who blame the system, nor can we accept substandard care and accept that as "it's the way the system works." I recently received a reply from the City Manager of our town in response to my request for explanation of obvious violations of municipal code and purchasing policy to the tune of millions of $. His answer (paraphrased)...Well, you know, you do something a certain way for so long that it becomes a habit and then a routine and then it's policy. NO! That's not the way it works. Medicine has become no different (with what I'll call the various players able to pressure the doctor/patient relationship). This becomes "standard of care" which is not always based upon best medical practices but also on what insurers and the government will reimburse. Patients should never be afraid of being labeled as "difficult" (or worse) and thereby not speak up. Medical staff should never label patients in any way...it's almost always derogatory. If you apply this to any other discipline or business, how can there be any positive change if no one, or just a small minority, is willing to speak up. Case in point, when you're in the grocery store and you open a carton of eggs to check for breakage do you tell someone about the broken one or do you simply put it back and take a different carton?
        • Interesting.. I would not compare buying a carton of eggs..understand what you are saying though. (I will take an egg from a carton with other broken eggs and replace etc.) I have found the prediction of bad outcomes can be pre-determined. Deliberately. Treating according to bias or politics is not an unusual thing. I am not an idealist...I do know that doctors can pick and choose their patients and trade off...did a training resident actually do my surgery? or did the doctor standing there..lead me to think he was? Did the dr call in and ask someone else to fill in..were they short nursing staff..etc. Did the dr break protocol ..or as some of the local hospitals experienced in the late 80's 90's..have a killer nurse in their employ? After close to $10,000. you should see my son's teeth. Between his ... and 3-4 dentists and staff they all worked together to make sure there was a bad outcome. I want to move him..no matter..he goes to the same dentist..his hygiene is fine as usual (ha) and after his ..just too complex. There are some real sick men and women working in the medical field....legal system...school system. They sometimes work together. Do you get diagnosed with STD's when you have a staph infection? Are you given expired medication by dr's and pharmacists?
          • D Someya Reed
            All the more reason to speak up. Ask, what are you doing...ask, why (do I need that)? A few get labeled as difficult...a lot identify a problem. A good doctor/good practice (or merger) want this kind of feedback. You can't correct what you don't know. Sometimes you have to go over the head of the problem to get the correction. Hard to do when you the one who's ill. All the more reason for a strong advocate that you've chosen. Even bad doctors and med staff will tell you that they are advocating for you. If so, then they shouldn't mind if you bring your own.
          • I could speak up and be the most truthful and most eloquent person in the place...I have been dismissed, ignored, invalidated, made fun of..do you comprehend what discrimination and abuse are about and how perpetrators do things? My son has learned how to do it. His girlfriend is real good. When someone wants to discredit someone..
  • D Someya Reed
    Jilll...this takes us way off topic but I do want to reply to your question. Though personal, I am not stating anything here that I wouldn't place on the front page of the newspaper. Sorry I couldn't make it shorter. Yes, unfortunately, I do know discrimination & abuse and being dismissed, ignored, invalidated and made fun of, too. I know being physically beaten for standing up to protect those who were innocent, those too weak to defend themselves and even for what I believe in. I grew up in a home with an alcoholic father and a long-suffering, turned psychologically abusive mother. Not that unusual, really. Somewhat unusual is that I didn’t (and don’t) drink, do drugs, smoke or cuss. I was an honors student all through school. Never been arrested or in trouble with the law. As I was always told that I “had my nose in books,” my parents had to invent things to punish me for. If a crime was committed and made the newspapers, I was awoken the next morning by a punch to the stomach and accused of perpetrating the crime. I was beaten with belts, rubber hoses and had my head bashed into things. When I reached teenage years, I was now eligible for punches to the face and had guns pointed at me by Dad ("I put you on this earth and I can take you out.") based on Mom’s “suspicions” (when they weren’t pulling knives on each other or throwing kitchen chairs through the wall). At 18, I was told to “leave or I’ll kill you” based on another fabrication. I left. At 19, I married a woman with a young child but for the wrong reason…the “savior complex.” At 21, we had a child. When we divorced about 5 years later, I was painted as the “bad guy” to my daughters just as I learned I’d been equally painted to our friends (throughout the marriage). Apparently, it’s too difficult to listen to your friends complain about their husbands’ drinking, cheating & abuse without making up a few complaints about your own. She explained that it was embarrassing to have the only nice husband. The “stories” told to the girls during & after the divorce are only being recognized as just that now (stories)... and my youngest is pushing 40. Skip ahead a bit and I met a woman who taught me what it was like to be loved and to love someone more than yourself. She was the kindest individual I will ever know. She was rewarded with the most virulent form of breast cancer, left quadriplegic and died, in my opinion, at the hands of those who claimed to be there to help her. I was with her at every appointment, treatment, surgery…everything including her final moment of life. I spent our last dime to be at her side as her 24/7 caregiver. Right where she wanted and needed me to be. I spoke out every time to get her quality care when it wasn’t being offered outright. If it had been in my power, I would have traded my life for hers. We had our share of condescending, patronizing, uncaring, arrogant to actually abusive medical staff and doctors. Neither would I tolerate nor allow her to tolerate any of it. It was not easy but it was right and in every instance, the staffers knew it was right, too. Had I not spoken up, she would have died on several occasions. So then, there’s no more that medical science can do so here comes hospice with their 'we are “THE MORE” that can be done attitude.' They told us every positive thing we could have possibly wanted to hear. Told us how their staff were “angels” (of mercy), of their glowing, decades long reputation and of their “non-evil” not-for-profit status. We believed them (stupidly, in retrospect). It was good for 3 days. My wife liked the nurse and she did seem to “care” about my wife, until her 72 hour assessment was turned in. This nurse stated in her report that my wife would likely be a complex case and she asked to have her case load reduced or to share my wife’s care with another hospice nurse to provide the proper amount of care for my wife… a good thing. Well, not so much for hospice management. You see, once accepted by hospice, the hospice cannot discharge a patient for being either too costly or too time-consuming. The expectation, not reality, was (for hospice management) that my wife would be both too costly AND time consuming therefore an undesirable and non-profitable patient. Yes, non-profits look to make a profit, too. So what’s a hospice to do? Replace the conscientious nurse with one who doesn’t care at all, come the very next morning. Then, fail to and/or drag their feet on providing needed equipment. Suggest repeatedly to the patient that maybe “you’d be happier going back on home health care through the local hospital.” Offer drugs to the patient for which you know the patient is fatally allergic. To protect yourself, in case sometime over the next decade that a State surveyor (auditor) might look at this file, report that the husband/caregiver won’t allow you to see the patient (even though you did so every time you came out) and report that you believe that the husband/caregiver is abusing the patient (but never give specifics and ignore mandated reporting laws from the State because you know nothing actually happened). Ultimately, suspend care on the patient, bring out an illegal, unconscionable contract, lie to the patient about why the contract should be signed (standard procedure, accused of Medicare fraud…) and eventually insist that the patient (though quadriplegic) and her caregiver must each sign and obey the contract without question or face immediate discharge. When met with objection, and before CMS and the State can get involved, wait a couple of days so that the patient’s pain becomes so unbearable that she acquiesces to your demands. Come back out, roll patient fully on her side (even though you know this will compress her lungs, full of over 30 tumors inside each lung and masses outside, causing respiratory distress/arrest) then hold her in that position while she screams she can’t breathe. When she’s taken to the hospital for respiratory problems, log it into the file not as “symptoms that can’t be controlled at home” (you might have to explain why) but rather as “caregiver breakdown.” When patient subsequently dies, attempt to get the hospital to hold the body until you (the hospice and without explanation) decide you want it released. That was four & a half years ago. I have made hundreds of phone calls to dozens of agencies (medical, State, Federal, legal). Filed complaints and presented evidence (even in person). Been rebuffed in all cases. Dismissed, ignored, invalidated and made fun of, too. Nobody wants to touch a hospice case this horrific. I was even asked if I knew so much, why then couldn’t I save my wife from cancer? I’ve testified before commissions & the State legislature. I’ve even discovered possible collusion between hospices and the State licensing group. I’ve been barred from the hospital (where my wife died) by the hospital’s risk manager after contacting them (by phone) 3 times in 2 years. Risk manager said falsely that she has been receiving repeated complaints from staff throughout the hospital that I am bothering them and hindering their duties but didn’t mention the “arrangement” they were making with this hospice and their new cancer center. I’ve been barred from this hospice’s property or any function they sponsor because their new bereavement manager invited me to a bereavement session in my neighborhood. I went and was asked to disclose a multitude of personal information about myself and my wife (not protected by HIPAA regulations) and I refused. I was asked why I refused and I explained why. I then received a letter from the hospice’s attorney detailing allegations that I reacted violently and unbalanced at this meeting, caused distress to participants (there was only one other person there to whom I apologized before I left…by my own decision…for taking up any bereavement time). The lawyer added that hospice staffers claim to be in fear for their lives in my presence. None of what they say is true. Money has been tough to come by since I walked away from my career to care for my wife. I’m not complaining…I did what I should have done. Our house has gone into foreclosure twice and, with the help of family and friends, I’ve been able to keep it. When I tried to work out a forbearance agreement with the bank 2 years ago and, at the time, gave them another copy of my wife’s death certificate, I started receiving calls from them asking for my deceased wife. The first couple of times they apologized then they started calling more frequently whether I was current with the payments or not; sometimes 7 days a week, sometimes hourly. They asked for my wife, and even though the file said she was deceased, they started asking that I “wake her and have her walk to the phone” then laugh and hang up. They knew she’d been quadriplegic as I’d explained it in the initial discussions and in my written “hardship” documentation. It escalated to comments like, “Our records indicate that your wife is not all dead just mostly dead”…then laugh again and hang up. It’s been 2 years now since the calls started and they still continue. Apparently, it was so funny that they have passed the information to others outside the bank and I get calls from all sorts of callers pretending to be from the bank. They’ve added threats of escalation and have made changes to the mortgage file to facilitate their continued actions. The bank claims they don’t know who it is or how they’re doing it. So, yes, I know discrimination, abuse and how people do things to other people. But will any of it make me give up…no. Will I stop speaking out …no. Many people would. Many friends of ours have expressed concern for my safety (usually commenting about the old Karen Silkwood movie). However, my resolve is unshakeable to keep the promise I made to my wife to see that this could not happen to another patient in hospice. I like to remember the quote attributed to Thomas Edison: “I have not failed. I’ve just found 10,000 ways that won’t work.” My answer, as I'm sure was his, is that someday I will find the one way that will.
    • Then you are to be called a champion. A human rights champion. I love to hear peoples stories. A well known local journalist said '"one has to give a piece of himself" to be receptive to people and get their honest stories. The Thomas Edison lab is about 45 minutes from me..great place to visit! Having a teen age son I meet many young people..and am sad to hear ...near same stories of and about people I grew up with. Many with physical and mental disabilities. We need more champions.
      • D Someya Reed
        Well, thank you for the compliment but I don't really see myself as a champion rather just some guy trying to do the right thing.
        • D Someya Reed
          Didn't really know about the Edison Lab...went to the website...looks really interesting. Sad, because I was working in Newark for a time and never knew I was that close. I'm now 2,820.03 miles away. I looked it up just for fun.
          • There are so many people who live in denial about what sometimes goes on. It is so good that you speak out. Did the doctors want to let her go? I have read many of your posts but am not sure...The Edison lab is a very cool place. When you walk through the huge storage warehouse you will find elements of everything imaginable..across the globe animal parts...etc..that he would use in his trials. He invented the first auto pen, talking doll...truly a man of the renaissance. I saw the Black Mariah theater and a movie of trains..I was there in elementary school and went there with a date who was interested. Lots of fun!
        • That is what champions do and they usually are very humble....
  • Dr. Salwitz, in my humble opinion, this is one of the most important and powerful pieces you have ever written.
    • James Salwitz, MD
      Thank you very much. I am honored. jcs
  • D Someya Reed
    In answer to Jill (Nov 8)…By “Did the doctors want to let her go?” I assume you meant, ‘Did they want to walk away or let her die?’ It would be ‘No’ to both. The doctors we had (surgical, radiology, oncology) were very good and collaborative with each other as well as with us. Everything was out in the open…good or bad…just as we had wanted. In getting to the collaborative ones, we did have our share of bad doctors (arrogant and lacking compassion…an understatement) but we didn’t stay with those. If my wife was treated badly either physically or mentally, I spoke up…right then. I didn’t wait to see if things got better. If these things were done at our first meeting, even when explained up front by us proactively, our wishes/concerns were being ignored and there simply would not be any “getting better” on their part. There was no time to waste as her cancer was extremely, even unusually, aggressive. It was in using hospice that we had our real problems. These same collaborative doctors had mentioned hospice, even early just as the hospice industry wants them to do. Hospice was first mentioned by our radiologist who said we might want to start checking hospice out. He added that “hospice needs to get over itself” which we didn’t fully understand what he meant at the time. We didn’t really check out hospices, as far as calling individual ones, and at that time we only had a choice of two. It would have made no difference anyway. We would have been told the same (salesman-like) things by both. There was and still is no good way to check out a hospice. Grief-stricken family members are neither a good nor reliable source of referral. The people you really need to talk to have died. We couldn’t have even imagined what awaited us under hospice care. Only when I talk openly about it now do people come forward with their own stories of conflict and even abuse. Rarely does anyone in the hospice industry or government acknowledge or accept that any of these things happened or even that they might be happening. So, many people just keep it all to themselves and the public continues to believe, as hospices will tell them, that all hospices are good, all people in hospices are good because they simply are connected to the word "hospice." In our case we would have been better off staying with our “team” of doctors. There is no way that they would have, or would have been allowed to by any law, to withhold care in order to attempt to force a patient to relinquish her rights and allow themselves, the hospice, to gain absolute and total control over a patient (her caregiver, her advocate and her family).
    • Mary
      I tried to get a feel about hospice-even if it was only the aspect of being admitted. I was blocked every way possible, and told to trust the system. I told them that I don't trust the system, not after what I've gone through. I asked my main oncologist, and he said that he didn't have any control over it. 3 of my doctors, at different times, have made oblique statements about me being a strong person, hospice wasn't made for me, that I could tell when the end should come, a sense of when it was time.
      • D Someya Reed
        Remember that the only say your doctor has in you choosing hospice is for him/her to commit in writing that you have a terminal prognosis of 6 months or less. If no doctor will do that, no hospice can legitimately enroll you. Understand all that you will be giving up if you choose to enroll in hospice. You must agree to give up all curative treatments as these are not allowed (some are trying to change this). Some medications and therapies are not allowed; even some that have been shown to provide for the relief of pain or provision of a better quality of life. "Allowed" in this case actually means...will not be reimbursed to the hospice by the government and/or insurance companies. Hospice is not something you want to try out for a while and see if you like it. I'm not saying that YOU are saying that but there are people who feel this way. Hospice is a cost cutting measure (and always has been since the early 80's when Medicare accepted it) but not for you, the patient. The savings realized are to Medicare and insurance companies. These savings are not that large individual to individual over the last 6 months of life as compared to traditional doctor/hospital care. Cumulatively they have significance. That margin of savings is slowly shrinking. When that savings reaches zero or should hospice start to cost more than traditional end-of-life care then we will actually see how devoted CMS/Medicare and insurers are to hospice.
      • D Someya Reed
        Also, when hospice began in the U.S. it was thought by many in the medical field to be "a fad" that would ultimately be absorbed by hospitals. Hospitals are slowly coming round to this way of thinking as they embrace palliative care. Palliative care is no different than what hospice does (or, for some, are supposed to do) except hospice performs palliative care for the imminently dying (hence the 6 month or less prognosis). Palliative care is not rocket science...doctors have been doing it for years without the name. If "Take two aspirin and call me in the morning" relieves your symptoms but doesn't cure the underlying cause of those symptoms, it's palliative. Many clinicians and hospitals are embracing palliative care through expanded home health activities, establishing separate (home-like) areas on hospital grounds and even creating their own hospices. This won't eliminate the need for all independent hospices but likely will deter those in it only for the money and using hospitals as "back-up" for what they can't handle. Good palliative care will provide for better quality of life for many far earlier and far longer by addressing problems well before they come down to a choice of hospice as it currently is and the "giving up" (curative treatment and therefore likely hope of cure) that it now truly entails and hospice routinely downplays or "redirects." No matter what you want to call it, good palliative care is where it's at whether provided by a hospice, a hospital or you, yourself, to your loved ones.
        • Mary
          When I say the feel of hospice. I asked questions. The questions were answered by the social staff that I should trust them and not to worry. Sounds like the Holocaust to me. When I mentioned hospice, etc to my oncologists-their faces became sad. Then they gave coded messages about suicide. You'll have a good sense of your time, you are a strong person and will do the right thing. I don't think hospice is for you, etc I was told that my diagnosis wasn't hospice friendly-I'm on my feet, etc. I just had questions, because I was told by social workers- don't worry- we have good hospice care, etc. If people can really take care of you, if something is good-they usually say more than trust me-and my doctors didn't seem happy about it. I already told my family what you said. I think that my father, who died from cancer in 1956 received better and kinder care than what most Americans get today-and he died in the charity ward. I hate liars-I call it the cancer industry for a reason.
    • I am glad to hear about your accounting of your experiences. I have heard the term 'let go' used by all levels of religious and medical professionals. Very often, I believe, it is because of legal orders on file , DNR, or the futile affect of continued treatment. I really had no one to advocate for me and basically still do not, Hopefully that will change. I have come up against medically impaired doctors and their practices. Unfortunately when they are all "one" so to speak, it is difficult to get unbiased care. Thank you again for sharing. I am so sorry when there are questionable outcomes. The hospice system is in need of rethinking. Here in this area there are 'volunteers' trained..not necessarily the right kind of individuals that should be in these places.
      • D Someya Reed
        I am sorry to hear that you don't have an advocate. I, too, hope that will change and soon. I thought as you do about finding unbiased staff in a group practice but I did find it in our case, several times. They may have to follow one set of rules but they don't all think the same. Obviously, I agree that hospice needs some rethinking but there are just too many of them that feel and claim they are perfect. Some don't say it when you talk to them as a non-client but when you are a possible enrollee...things change drastically. Funny you mention volunteers. We didn't use or need any. Plenty of family and friends stepped up...sometimes too many for my wife to handle. Hospice "training" in our area is limited to 8 hrs and the volunteer has to pay for it. I've yet to find that anywhere else. I doubt that 8 hrs is enough for the diversity of people they get. The most training time I've heard is 24 hrs. I agree there are some people that should not be allowed to volunteer but are accepted anyway. Medicare does require that a certain percentage of hours must be performed by volunteers.
        • Most of my brothers and sisters that are still alive have serious health problems and, frankly, I chose a route toward education and was very independent. I never was 'funded', so to speak. I did have some help but usually would end up paying for accepting it. coming from a family of nine children..some who still are in my opinion, fosters some problems automatically. Anyway, there was an issue when I wanted a phone near my bed connected..sling, drain, IV on other side..still to anesthetized, and all my Mom was worried about was someone 'bothering' me. She was just real upset..and did not and still does not have a clue to who I am and why. I passed out until about 12 am. A nurse came in and threatened to catheterize me if I did not go to the bathroom. One is not allowed to eat or drink etc...get the picture. I did not have to go. Makes me laugh. I asked the aid to bring me a pitcher of water. I drank three or four pints. Then the aid moved the tray and bedpan to the other side of the bed across the wall where I could not reach it. Get the picture. I was so upset and in so much pain by 6-7 am..the Surgeon came in and released me..my Mom showed up.
          • D Someya Reed
            Not only do I get the picture but it brings back some memories. Funny, I too am from a family of nine kids and am the independent one. Before my father died he told me that of all his kids he was most proud of me because I was the only one who never asked him for anything. Would've been nice to know all those years I got in trouble for being "Mr. Independent."
          • Funny isn't it. I had my first job as a 'mother's helper' when I was 12. Here is another good story. I received a call from a hospital nurse/social worker in New York. I live in NJ. My brother was conscious after three days and major surgery. He had no ID, was stabbed three times on his way into Port Authority/Penn Station? by 2-3 men who jumped him..large blade. My husband was so generous to drive me in to see him. He needed to go the bathroom while we were there and there was no urinal. I went looking for a nurse (noticing the cockroaches crawling up the wall) asking for a urinal and she told me he should not have to go. By the time I was back he tried to get up to go to the bathroom and fell.
  • Different perspective for 'letting go', and thinking of the aforementioned 'union' of doctors etc,..I thought of Star Trek.."the needs of the one outdo the needs of the many" ...
  • D Someya Reed
    Don't get me started on Star Trek...I am a fan...not an obsessed one, though. The needs of the many or the needs of the one may be pertinent in times of self-sacrifice but it's a whole different ballgame when someone else is making the decision for you (and without you). I'm reading 'The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life.' Good book...wish I owned a copy (got this through the library). As I read about "competencies" and "ethics" as proposed by the authors to "shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States" I have to wonder how few clinicians (in my experience) exhibit having their definition of the nine core competencies for the "responsible professional" and how fewer there are in hospice. To be fair, and all-inclusive, no politician that I have met with or spoken to would even pick up let alone read a book such as this but will happily make decisions affecting those that the book covers.

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