The neglected hospice patient

Today, I hesitated to refer a patient to hospice. The patient is perfect for that model of care.  She has strong family and friend supports, multiple opportunities to maintain quality, independence and dignity, and while she has a disease we cannot fix, she will do very well with personal palliation. Nonetheless, I almost did not recommend hospice, because I realize that hospice is going to completely fail to take care of a key member of this patient’s care team.  They are not going to take care of me.

The hospice concept places the patient and family at the center, surrounded by the hospice team.  The referring doctor is a loose member of that team, but is not involved in the hospice meetings or daily decisions.  The problem with this model is that after taking care of a patient for a long time, the doctor is often close to the patient and more or less, emotionally attached.  Referring a patient to hospice may result in a significant loss to the doctor.

Hospices usually do not maintain a close conversation or bond with the primary doctor. They send the required paperwork and call with the occasional emergency, but often the next significant contact after the original referral, is to notify the physician of the patient’s death.  For those doctors who are not comfortable with end-of-life care, this professional and functional distance may be acceptable.  However, for many doctors who fight fatal diseases month after month or even year after year in each patient, the loss of connection is draining.

I have never had a hospice say, “Hey doc, how are you doing? This must be hard on you.”  My loss, my pain, is not acknowledged. Generally, that is OK.  It is not the job of the health care system to heal my wounds.  However, I wonder if one of the causes of late hospice referral is the abrupt severing of invested patient-physician relationships.  Hospices, who are charged with comfort and bereavement, ignore the pain which comes from loosing patient after patient and having no one say, “Are you alright?”

Thus, as I explained hospice to this patient and her family, I made a point of saying that I would still take care of her, that I would be closely involved and that the hospice was not “taking over.”  I noted that hospices are so motivated to bring comfort and support into that patient’s environment that they often cut out the treating doctor.  My patient’s extraordinarily insightful friend summed up that action, as “militant kindness.”  I could never have said it better.

Those of us who fight battles, which we know we will loose, cope with reality by finding perspective.  We do not invest in false cures or false hope.  We focus on what we can truly achieve.  However, we are just human and, not rarely, we fall in love with the patients and families held gentle in our hands.  Perhaps, sometimes, it might help if someone would hold us as gently.


  • Ray
    As we go thru this phase of our life I admit that my focus is on my wife's condition and, I admit, my own. She is the primary focus however as I struggle to "make things better" I often find myself in doubt about exactly how to do this. Over the past several years of our regular meetings we have often thought of what it must be like for you to be in constant, 24/7, awareness of having multiple patients in various stages of treatment. I suppose the depth of our problems has kept us focused on ourselves and has prevented us from reaching out to you but this does not translate to a case of not caring. For the past several weeks we have been under hospice care. The hospice personnel that we seen have been sincere, caring and professional, answering all our needs and questions however both my wife continue to I look to you with no less attention and admiration than when we were first under your care. We never considered that you played a lesser role in our lives when we moved to hospice care. Thank you for continuing to be with us, we feel very fortunate to have you as the leader of our team. As for not caring about you nothing could be farther from the truth.
  • Wow! Thank you for that unique perspective. In some ways I wonder if there wouldn't be some relief for the physician. I, for one, might feel abandoned by my doctor. I know the family might worry you no longer cared. Whose responsibility should it be to keep you in the loop? Very provocative questions. Do other oncologists share your feelings?
  • Dr. Salwitz, your brutally honest admission may help to explain a troubling reality for those who work in hospice palliative care: the inexcusable delay in referral for patients for whom such care would have greatly helped both patient and family. I'm not sure why any oncologist could not continue to connect with the newly-admitted hospice patient and family through visits, phonecalls, emails rather than simply waiting passively for the final death announcement to come. I worked in end-of-life care for many years, where my colleagues frequently agonized over the physical and emotional state of incoming end-stage cancer patients whose pain, nausea, shortness of breath or other distressing symptoms could have been expertly addressed far earlier if only their physicians at the cancer hospital had referred them for palliation. Sometimes, patients were admitted to our inpatient unit in the middle of the night directly from Emergency - where their distraught family members had brought them due to increasingly frightening symptoms. Virtually all of these knew nothing about hospice palliative care until they were admitted, sometimes for their final few hours - their oncologists had never mentioned it, for to mention it would be to talk honestly about the D-word. Where were their caring oncologists in the middle of the night? And why hadn't those oncologists done the right thing for patients they ostensibly "fall in love with" by referring them for appropriate care when it was clearly needed? Your comments also reflect a common misconception: that somehow end-of-life care is only for the imminently dying, despite the reality that hospice care addresses physical, emotional, mental and spiritual needs for those facing a terminal illness. Only a death-denying attitude would prevent physicians from offering such options to patients in a timely fashion. To deny or even delay appropriate palliative care is simply bad medicine. To do so because of some sense of personal loss around facing reality (i.e. not every life can be saved through cancer treatment) seems even more shocking to me. LIke so many of your loyal readers, I know that you have a big heart. It shows in everything you write. This perceived "loss of connection" you describe here is yet another example of that big heart - but I'm hoping that you will never again hesitate for any reason to refer any more patients to the care that's most appropriate for them.
    • As the family of a dying patient, we were referred to hospice on the day our loved one died. He was only 28 and still in the hospital. We found out after he died that his attending doctor left orders before he left for the evening that if the fluid around the lungs worsened he was to have a thoracentesis, a procedure that woulld have saved his life. It did worsen, but no one bothered to do the procedure. He was "hospice". I'm so sorry that we trusted any of them. I will never consent to hospice again.
      • Pamela
        You've been misinformed My Dearest. A thoracentesis is a comfort measure and certainly not a cure for a terminal illness.
        • Jaqueline Rossi
          I am aware it is not a cure. It does, however, make room for the lungs to expand and get air, ---something that my son could not do when he died.
  • merry
    Thank you for this. Opened my eyes and my heart.
  • meyati
    The system that I'm in has hospice for the last 2 weeks. I'm in remission right now, but my ENT, radiology oncologist, and main oncologist have already told me that the hospice and pallialtive system here failed me. I don't have the normal cancers that attack the liver and kidneys, so I won't meet the HMO and Medicare standards in lab work to be admitted to a hospice. If I don't pass from something else, the cancers will make narrow tunnels through my brain, until one accidently eats something important- a gland- my brain stem. If I contact their offices about anything-they get me in the next day, especially the ENT and radiologist. So I guess that a hospice won't be interferring with the relationship that I have with these dear men.
  • Thanks to all three who have replied. And thank you for bringing this topic into the light. I am not in hospice. However, I still miss my primary physician in California, who came to the hospital just before midnight three nights after my spine fusion. He asked about my pain medicine, and made it clear he still was taking care of me. I know that he visits patients in hospice. Perhaps that reflects the attitude of hospices near him. Now, after unpleasantness at spine rehab, I am in another state,and just finished radiation for DCIS. I am frightened by the idea of going to hospice at the end of my life and meeting yet another battalion of medical people I don't know. And wondering if doctor I do know, who has bonded with me, will be available. Patients do not not always feel any sense that an oncologist is the right one for them personally. We unexpectedly get a "specialist distance." The idea that the doctor feels bonded to us is missing. And sometimes we don't know how to ask for someone else. Perhaps you will show the courage my CA doctor showed when he "showed up" for us. And again, thank you for making me face this situation. .
    • meyati
      It's not the specialty, its the person that makes it right for me.For me, primary care sucks. I did have an oncologist that wanted to cut most of my face off, including bone. I got rid of him and fought the clinic's administration to get him to sign the release form. What's sad is that the other doctors at the tumor board wanted to care for me-and he wouldn't let go. I went up to the clinic and screamed, kicked the wall. Finally I said--SUE---. I can relate to these doctors, but I've been having such a hard time with primary care. Right now I'm in a glucose feud, It goes up after Halloween, and comes down the end of January. My lab graphs it for me---this has been going on for years, and primary care doesn't understand why I don't give a darn. I called up the lab yesterday. I found out that I can tell the lab techs.not to run a glucose. I'm not giving up pumpkin pie and whipping cream.
  • Dr. Salwitz raises an important concern that the physician be kept on the team in Hospice. I can imagine that the relationship of patient to doctor that was developed would be of great help in Hospice and that the patient might feel let down or abandoned by the loss of relationship with his/her physician. I was encouraged to hear a doctor talk about feelings of loss when a patient enters hospice. I will ask my Hospice chaplain colleagues about their experience with the team and how physicians are included. Thank you Dr. Salwitz for your vulnerable disclosure of your human feelings of attachment and loss when your patients enter hospice.
  • Jean Manly, LSW
    It's unclear whether, having made a hospice referral, you would expect to be able to bill for continued contact. However, Medicare and other insurance providers don't allow that. If you are not seeking reimbursement, there is nothing inappropriate in maintaining casual contact. During my mother's last 15 months of life, she moved from Ohio to my sister's home in upstate New York. One of her physicians, a surgeon, intiated and subsequently maintained casual contact by phone, offering helpful suggestions for her ongoing medical care. The contact appeared to have been emotionally rewarding to both parties. My sister and I were grateful beyond words for his involvement.
    • James Salwitz, MD
      Medicare and most insurers allow and pay for the primary referring doctor to continue care. jcs
  • merry
    They allow as long as you are not treating the condition that they are in hospice for. Most patients have other issues. Thank you again for this wonderful conversation.
  • I so appreciate your vulnerability here. I'm in tears just now because this may explain what happened to my mom. She had a wonderful primary physician for 30 years and was quite fond of him, having come to him when he was just starting his practice and she was just retiring. He referred her to hospice at her request, but continued to see her. Then she moved out of state when none of us 'kids' could move to her house for the end game. And suddenly her primary physician was nowhere to be found - failing to return phonecalls, even failing to make the required referral to the new hospice in the new place. Maybe his own sense of loss was why. Thanks for letting me know that. It's too late for my mom, but it gives me some peace.
    • James Salwitz, MD
      I am happy that my words may have helped you find some closure. Such painful memories linger for a very long time. jcs
  • Deirdre Criddle
    I am a complex care coordinator. I work in an interdisciplinary team. I am a “communicator across boundaries”. Much of my work is “keeping the primary care team" – and indeed all clinicians involved in these complex client’s health journey, updated on their patient’s progress.” During the course of a conversation with a hospital specialist who seemed interested in my role, he expressed genuine surprise when I suggested “my most powerful intervention is usually linking my complex clients with good primary care practitioners – often GPs and community pharmacists who care.” You see, from my perspective “access to a doctor/specialist/uber-brain” is not the be-all-and-end-all in successfully navigating your healthcare journey in a fragmented, super-specialised and siloed system. But finding healthcare practitioners who care for their patients comes very close. Sadly the “default” position in clinical handover - whether it be across a shift, a ward, on discharge from hospital or to referral to another medical discipline - is exactly that. Handover. Well done Dr Salwitz for asking to maintain your important role in your patients care. Small steps can make for big changes. I make it my business to update all “clinicians who care.” You were courageous in asking for this, and may well have given cause for many to pause the next time they receive a referral from a primary care physician.
    • James Salwitz, MD
      Thanks very much. I guess if my words are to achieve anything, it may be to remind dedicated hospice staff of the caregivers who have already served and cared for each patient. ics
  • Kathy Herbert
    Dear Dr. Salwitz, What a beautiful article! I know as a general patient of any doctor, I try not to take up time with unneeded stuff with my doctors. We all get very caught up in the idea of professionalism and I can see a lot of people not wanting to "burden" someone who may be perceived as having a hard job once the hand-off is made. Like a lot of things, the path to a not-so-good-place is paved with good intentions. It is wonderful that you speak up about this and hopefully, as another said, this communication can help facilitate other communications so that doctors like you, who invest in their patients, can participate more fully once hospice gets involved. On another note, my mom was once one of your patients four years ago. We had gone through a rough experience with my dad's horrible end-of-life care and when my mom got sick, my family was so terrified we would experience similar with her. You made one of the worst times for us more gentle, less stressful and just more tolerable. You were there with us to the end, keeping an eye on her as the disease progressed and even there when we arrived at the hospital after my mom had passed. That meant so much to my family, that you were with my mom until we could get there. I was pregnant at the time you treated my mother and I will always be grateful to you for all that you did.for us. I was able to get through that horrible time, then the time that followed to deliver my baby girl at full-term and then also go on a year and a half later to have a son. I admire your bravery for being in a field where you open yourself to helping people who are often facing end of life issues. Thank you for all you do.
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  • D Someya Reed
    I must commend Dr. Salwitz for sharing his personal feelings of loss in the frequent and needless severing of the usually long term doctor/patient relationship when hospice is introduced to the equation. But there are a couple of other things that Dr. Salwitz may not know. Hospice knows, but they’re not likely to tell him or you. Dr. Salwitz is correct that hospices usually don’t do a very good job of maintaining a “close conversation or bond” with most patients’ chosen attending physician. The patient’s choice of naming an attending physician has been mandated since CMS/Medicare began payments to hospice (as a cost cutting measure for Medicare) back in the early 1980’s. Since then hospices have stated, usually in their “myths of hospice” or “FAQ’s about hospice,” that “you can keep your own doctor.” Sounds familiar, doesn’t it? What most hospices won’t tell you is that since this mandate was made, hospices and their industry associations have been advocating for the “complete removal of your chosen attending physician” from patient care and concerns once the physician has signed the mandated 6 month terminal referral paperwork and maybe, signed off on the plan of care. Their reasons for excluding the one medical professional that usually has the most intimate knowledge of the patient’s conditions and needs?...Hospices will say that the attending physician is not readily available when needed by the “team” and is too hard to reach during times of crisis; therefore, is an impediment to patient’s care and may cause the patient to suffer needlessly. Hospices state that some of them have their own staff physicians (which obviously they would prefer that you use) and all have a medical director that, as a physician, is authorized (by CMS) and competent to step in whenever needed. This might, on the surface, seem to make some sense; however, who is it who actually benefits from an in-house physician/medical director following the same set of policies & procedures as the hospice team vs. a doctor following his own (or the hospital’s) set of policies & procedures? It’s not you, the patient. It doesn’t maintain the care relationship built over time nor does it provide any checks & balances for your care. If the attending physician is out of the picture, hospice (a group of total strangers) is in full control of your care…not your physician and not you. You will have just lost perhaps your biggest advocate. Fortunately, a big “Bravo” is due CMS/Medicare because they have held firm that they WILL NOT exclude patients from choosing their own attending physicians. They have issued multiple bulletins to this effect over the years usually with something like…Because we get this question so many times, we are issuing this bulletin to officially confirm that we are not withdrawing the mandate which allows patients to choose their own physician as their “attending” physician… Another thing that hospices won’t tell you is that they routinely doctor-bash those physicians whom you would choose for your attending physician. For instance, hospices routinely state that most non-hospice physicians don’t understand end-of-life issues, lack training in EOL or have been poorly trained, routinely under dose patients leaving them suffering and in pain (out of fear of lawsuits/malpractice), fear discussing death with their patients, continue to order tests (out of greed) even though futile, and on and on and usually putting at the end my (personally) most despised “D” word…they are in DENIAL. I’ve yet to understand why hospices say such things about physicians then turn right around and ask for legislative mandates that force these same “incompetents” to recommend hospice services to their patients. Why would they want a group that doesn’t understand them or what they do recommending them at all? Why should a physician who doesn't know anything about hospice other than they've "never heard anything bad" about a particular hospice or they've "heard more good than bad" be forced to recommend a service that he/she has sketchy knowledge of? Is this a quality recommendation? They claim that they (hospice) are superior at EOL care. Well, they should be! It’s their specialty! Can any hospice do what an oncologist can? What a surgeon can? Then, without physicians, how would hospices acquire patients? The only thing left, as I see it, is they might wait around at hospitals and nursing homes and approach people and say something like…Hi, you look like you might be dying. Now I can offer you care and equipment delivered to your own home and all you have to do is give up your pursuit of curative treatment, accept that your death is a natural culmination of your life, sign this contract and follow what we tell you to do (because most of us now are putting in our ‘Hospice Patient Bill of Rights’ a clause that says if you don’t follow the plan of care and it “compromises our commitment to quality care” then we’ll kick you out). Doesn’t sound so good or so easy being the first one to approach the subject of hospice with a patient, does it? My wife’s radiologist was the first to bring up hospice to us…long before she was paralyzed. He prefaced it with “Hospice needs to get over itself.” At the time, we didn’t know what he meant. Now, I think he might have been referring to this and perhaps he was a little tired of being doctor-bashed. So, a message to hospice, KNOCK IT OFF! If hospice wants acceptance by the public then they need to stop bad-mouthing the physicians that have honorable and skillfully kept these people alive and sometimes cured them of their ills. If hospice wants physicians to recommend their services then quit lambasting them every chance you get with comments about their incompetence in YOUR area of practice (which is not theirs but some of them are still far better at it than you).If hospice is such an “easy sell” for physicians in their practice then why don’t you come clean about it and sell it all yourselves in yours? Admit it…you need these physicians. Start working WITH THEM! As much as I hate to say it, who is it who’s in denial?
    • Thank you for your courageous post. Unfortunately, we may never know if any hospice decision-maker reads it or acts on it. My question to you and Dr. Salwitz is exactly what can a patient do? My CA doctor does visit hospice, but that's another place, another hospice. Should this be a part of our medical limited power of attorney? How do we protect ourselves from being separated from a primary doctor we trust?
      • D Someya Reed
        I can't speak for Dr. Salwitz but here's my answer... You're right...we may never know if anyone in hospice (in authority or not) has read or will act on this. In my experience, I'd lean toward they might read it but have no incentive (usually determined in dollars) to do anything. Therefore, the public (the hospice industry's patients/clientele) need to be educated and demand that change happen. CMS has finally learned this as hospice has been largely remiss in submitting its required quality improvement data. So, starting in 2015, hospices that don't submit this data face a 2% reduction in their market basket (essentially a reduction in payments). Now CMS has hospice's attention and they probably will comply. On the flip side, CMS also requires that this information be available to the public but haven't put a deadline or incentive on that happening (because that's their responsibility). One thing I don't understand is why they also have required that before the public gets to see this data, the hospice industry gets to review it first. So...if they don't like it, do they get to change it? If so, what good is the data if it can be manipulated to favor the hospice industry? Now, I'm not a lawyer but I don't think that a medical power of attorney is the proper place or would have any bearing on keeping a chosen doctor involved. Here's what I think: When you choose an attending physician it is not solely your choice...hospice doesn't really help you understand this very much...remember, they'd rather you use their physician or their medical director who's allegiance is more likely to the hospice rather than to you. So when you choose an attending physician you need to talk to that attending physician first to see if he is willing to be your attending physician and what he is willing to commit to doing for you (home visits, phone calls, etc.). When you talk to the hospice and tell them you've chosen your own attending physician, you need to ask the hospice specifically how they will work with your physician, how they will keep him/her updated, how often, via what method (phone, fax, email) etc, etc. You cannot accept generic answers like "Oh, we work closely will all attending physicians" or "We will keep your physician updated through regular updates to your plan of care." These tell you nothing except that, at minimum and because CMS requires it or a red flag goes up, that your doctor will get a plan of care update once every 15 days. Keep in mind now that half of patients in hospice (the median...50% above, 50% below) die in less than 20 days. I believe the most current stat is 19.2 days median lifespan from enrollment. This means that the hospice will send this form to an attending physician maybe just once or maybe not at all for 50% of ALL hospice patients. MOST IMPORTANT: Whatever the hospice tells you that satisfies you that your doctor will be involved adequately, you must demand that it be placed word for word in the contract BEFORE you sign it. And, it must be consistent with what your doctor said he/she is willing to do for you. This doesn't sound easy especially while someone is imminently dying but this is really the only recourse left to us (the clients and beneficiaries of what hospices routinely claim to be compassionate, patient centered hospice care...if it is...then they should be able to prove it by this). The reason it needs to be in writing, besides becoming a legally binding, contractual obligation is that hospices have been known to tell you anything to get you to enroll then, when you ask for what they promised, they'll tell you, "Oh, we really don't do that" or "That's not really necessary." This is also were a STRONG advocate comes in handy. This has to be a person who will not compromise the quality of your care for feeble promises. Interestingly, all nurses, by their own code of conduct are primarily supposed to advocate for their patients and their patients' rights. Nurses are the team leaders of the IDT (Interdisciplinary Team) in hospice. I saw zero advocacy from our hospice nurse and in the hundreds that I have talked to or visited personally, very few hold this view and fewer seem to act on it. Mostly, I suspect, out of fear of losing their jobs. I'd like to add that you can change hospices if not satisfied with the one you have but only once during each 6 month election period. For some, such as was the case for us, changing is not physically possible for health reasons or, in some areas, only one hospice is available. When you do have a choice of hospice (don't get caught up in the non-profit/for-profit Hatfield & McCoy feud...this has nothing to do with you and all hospices are required to play by the same rules) and you are physically able, you need to be prepared to make good on switching. Most hospices don't think you'll do it so they just string you along. You mentioned/implied that you are in CA (now or previously?). I am in CA and I can tell you some things about CA and complaints with the State. Things I found out much too late. Hospices are regulated, re-certified and patient complaints handled by the CDPH (CA Dept of Public Health) Licensing & Certification Division. All hospices need to supply you with the information with which to file a complaint with your State's governing board. They don't have to tell you anything more or help you file. First, of course, if you have a complaint the hospice wants you to go through each of their in-house levels of authority...nurse, nurse supv, nurse director, exec director, medical work out the problem before you file with the State. With the median life span statistics, you likely don't have time to do this. If your hospice is certified by say the Joint Commission (JCAHO), this introduces another layer for you to wade through with your complaint because they (JCAHO) want to know about it and try to resolve it before you go to the State and after you've done the above with the hospice. Again, you likely don't have time for this. The other thing about this "pay for certification" benefits the hospice and not you. How?...I call it a "Get out of jail free" card. If you file a complaint of condition level non-compliance on your hospice (non compliance with CMS' Conditions of Participation and in CA the only patient protection that you have because CA Code, Title 22 and CA Standards of Quality Hospice Care, 2003 have none...the latter even was written by the CA Hospice Association but both were legislatively approved as the "law" with respect to hospice) the hospice will be found to be compliant because they paid for "independent" certification of CMS' COPS. You lose and, to me, the conflict of interest is obvious. So let's say you file a complaint with the State of CA. You will get a letter stating that they (CDPH L&C) have 45 days in which to BEGIN your investigation. Remember that median average lifespan under 20 days? Because of budget cuts, staff reduction, backlog and the fact that hospice is out-ranked for complaint investigations by hospitals, nursing homes and home health (essentially LAST and I can hear them saying, "Well those in hospice are dying anyway"), they don't/can't even abide by their own 45 day rule. If they find out that the subject of the complaint is deceased then you may be told that your complaint (no matter how severe) has to go to the bottom of the list because they "have to help the living first." They will also tell you, wrongly, that they cannot enforce Federal law so if your complaint is for something in CMS' Conditions of Participation (COPs) there's nothing they can do about it. This is not true because all the CDPH L&C (or any other State's agency) has to do is tell CMS that they suspect "condition level non-compliance" and ask to do a condition level survey (audit). They don't like to do them because they are costly and time consuming for their staff. In our case, when I had multiple condition level infractions, CDPH L&C added another reason they didn't like to do them..."because hospices don't like them." That reason was definitely not on the top of my Hit Parade. Say your complaint was regarding an RN (nurse). You can file a complaint directly with the Board of Registered Nursing but (when I tried) they were SIX YEARS behind in investigations and trying to get caught up to an "acceptable" three and one half years. On top of that, they won't tell you if your complaint is valid (in other words, are nurses required to do what your complaint states they didn't do). They will simply tell you to write it up and we'll decide if you have a complaint or not...perhaps sometime over the next six years. Other States may be the same, better or worse than CA. But can you see yourself spending the time checking this out for either yourself or a loved one as they are dying. This is why I say that no real protection exists for patients of hospice, at least not in CA. I’m sorry to anyone reading this. This is an awful lot to take in. I didn’t want to just give you a list of do this, this and this without some explanation. That being said, here’s the “do this, this and this” list as a recap: TO TRY TO KEEP YOUR CHOSEN ATTENDING PHYSICIAN INVOLVED IN YOUR HOSPICE CARE: 1. Talk to your physician of choice. 2. Make sure that he/she wants or is willing to accept the obligation of your continued care. 3. Discuss with your now chosen “attending physician” what he/she is willing to do for your continued care both with you directly and with the hospice (this is a problem for physicians who don’t understand hospice so make sure your choice does). 4. Talk to your hospice before signing any papers. 5. Ask your hospice “agent” to explain exactly how your attending physician will be updated and how (or if) the hospice will take any responsibility to keep your physician involved. 6. Once (if) you are satisfied with hospice’s answers to your attending physician’s involvement, insist that they put it in writing in the contract. 7. Once you have read and approved that the contract wording is correct and consistent with what your attending physician stated that he/she is willing to do then (and only then) sign the contract. 8. Remember that you can change hospices once during any enrollment period for any reason you choose. The hospice is bound by CMS regulations to continue to provide proper care for you during transition and help facilitate the move. Do not accept anything less. Complain to your State’s governing body for hospice non-compliance. 9. Remember that you may not have much time in which to resolve problems so if you think you should file a State complaint or switch hospices, do it right away…don’t over think the “should I/shouldn’t I” question. It would be wise to pick two hospices initially with the second one as a fall-back position. 10. Choose an advocate who will be strong and not-easily swayed by hospice blather or double-speak. Make sure this person has the power to speak for you and is recognized as such by your hospice choice. This may include granting medical power of attorney to that individual but this should always be done wisely and with much prior discussion and agreement between the two of you. Anyone who has any questions on this or any other hospice related matter for which they feel I may be an educational resource, please ask Dr. Salwitz for my email address and I will blanket authorize him to release it to you. My goal is to educate the public on hospice so that all patients can be protected as best as possible and so hospice can be universally as good as they claim to be. There are many good hospices with many good people working and managing them. There are also, and unfortunately, too many hospices that shouldn’t be in business or shouldn’t have some of the employees or managers they do. Too many people are dying badly with their stories being covered up or attributed, by hospice, to a lack of understanding of hospice by “distraught, grieving families.” I want to change that. I know I can’t change the world and I’ve learned that legislative change is far, far too slow. The best approach (and defense) is a highly educated hospice public who knows their rights and when those rights are being trod upon. Any hospice that has a problem with this is not a hospice that I would choose for anyone. I would welcome and encourage any of them to come on this blog and tell me where I’m wrong.
    • Pamela, BSN, RN, CHPN
      Interesting perspective here which is quite contrary to my "experience" as a hospice ADMISSSIONS nurse in a major metropolitan area. Medicare does require the patient/family to name their choice of Attending Physician, who may continue to bill Medicare. Medicare also requires contact with the patient's choice of Attending within two business days. On the occasion that the Attending MD will receive my phone call at the time of admission, 99.9% of "specialists" will defer symptom management to the hospice MD. A few Attendings say "I will co-manage" this pt, which means call me during business hours (so i can bill Medicare) BUT call the hospice MD at 3am and on the weekends. Over the past three years, I have met just one cardiologist who was physically present at the bedside, completely committed to his patient's comfort. When I asked the cardiologist for pain/dyspnea management medication orders, he said "Please call the hospice MD, that is not my area of expertise." Hospice medicine IS a medical specialty!! ... this specialist was willing to place his patient's needs for dying comfortably above the needs of his own ego. Take note, Dr. Salwitz and fellow bloggers, who choose to perpetuate the myth that hospice "steals" patients from their choice of Attending Physician.
      • James Salwitz, MD
        Interesting thoughts. I am board certified in HPM, have been Director of 3 hospices, have taught Death & Dying at the medical school for 20+ years and always follow my patients as primary. Still it is a rare day when a hospice nurse/doc/volunteer reaches out to me on a continuous basis and never have I felt included in the team deliberations. There is a tremendous opportunity to spread the word by connecting better with primary docs. Thanks very much for your comment. jcs
        • D Someya Reed
          To Dr. Salwitz: I didn't know much of this about your background (as you stated above). You had made it clear from our very first exchange that you supported hospice. I do too but only with the "good" qualification applied. I cannot accept anything less in something so final and incapable of correction or re-do. Even knowing that we're all human and make mistakes. But in my experiences with hospices over these years, most have made it crystal clear that my thoughts, knowledge, opinions, offers of assistance...anything...were not welcome...not needed...not appreciated. That hasn't and won't stop me from continuing what I do. Had I previously known your background and with my rebuff at every hospice turn, I would very easily have expected you to be the same as they. However, where they refused to hear or let my words fall on deaf ears, you listened. Where they refused to post my words, you accepted them all, though at times we simply agreed to disagree. You are an even far better person than I gave you credit for and I am honored that you allow me and all of us to say what we think without edit, deletion or condescension on your blog. You are a fine human being! I've often said and continue to say to people I meet, "You may not like me but I guarantee, even though you've never met her, you would like my wife, Jodi...she's just that kind of person." I can think of nothing more personal and important to me than to say to you now...If Jodi were here, I can guarantee she would like you. Thank you for always listening.
      • D Someya Reed
        CMS does not require any patient to name an attending physician; it's a choice. If the patient does not choose one for themselves their care defaults to the hospice physician (if available) or the hospice medical director. CMS does require a physician outside of hospice and along with the medical director to certify the patient's prognosis/life expectancy, though. This doctor may or may not be the attending physician. I don't think anyone said that hospice steals patients from their attending physicians. Hospice does not do a good job of including the attending physician (or feel that it is their duty to do so) but will most often imply or even tell prospective patients outright that they will. It is absolute fact that the hospice industry and hospices individually have applied years of pressure to CMS to eliminate completely the attending physician once hospice enrolls a patient. If CMS agreed to this (they don't) then and only then would anyone be "stealing" a patient. The medical director is also allowed to "substitute" for the attending physician if the attending is not available. How hard do you suppose each hospice strives to make that contact? CMS does not require that the attending physician physically sign the updates to the plan of care as long as they are discussed or made otherwise available. How do hospices prove that this was done appropriately and who's checking and how often? But attending physicians aren't off the hook. It is of equal responsibility for the attending physician to remain actively involved in the patient's care when that physician accepted that role from the patient and whether they bill for their time or not and whether the hospice makes it easy for them or not. The doctors you describe that shirk their responsibility onto the hospice physician or medical director are just as wrong as the hospices that make little to no effort to include them. So what about the patient. In all this, the patient is still the patient. Nobody owns them so no one can "steal" them. Your comments imply that this is about money...if you steal a patient you steal money in the form of billing opportunity. That's not at all what this is about. If we can have this discussion and be as far apart as we (three) are, have you ever stopped to think about how it is for the patient (utmost) and the family (secondarily)? They more often than not, know nothing of any of this. How much of any of this does any hospice staffer or any physician (accepting the role of attending) explain fully to the patient? There are good & bad on both sides...hospice and attending. There are even bad patients. The "myth" is that "we're all working together" when it's painfully clear that we're not!
      • D Someya Reed
        Please do not misinterpret this as "sniping," Pamela, but in your status as a hospice professional I would respectfully and very much appreciate your answers to the following additional questions, as well as, your thoughts regarding your re-interpretation or confirmation/non-confirmation of legitimacy as to my previous comments: 1) Do you consider it a myth that hospices "steal" from their own in the form of the feud between some non-profit and for-profit hospices in the "cherry-picking" of the more profitable patients? If so, do you think this is a valid practice and of benefit to hospice patients as a whole? 2) Do you think it was a bit unfair for you to write "BUT call the hospice MD at 3am and on the weekends" (but not as a quote, yet offering a full implication of having been spoken in some form) when in either case of a call placed to a hospice physician or attending physician during off-hours you are unlikely to get either one personally; rather you will most likely get their on-call person or service? Have any attending physicians actually said this to you directly? I have been studying every aspect of hospice for nearly five years now. I have put myself and my findings "out there" by testifying before city, county, and state legislative bodies. I have offered my personal story and my knowledge to hundreds of hospices and hospice associations across the U.S. with the purpose of educating the public with lessons I have learned the hard way and ultimately to improve hospice for all patients. To date, NOT ONE has yet to print one word of what I have to say and MOST (even some at the Executive Director or Medical Director levels) have shown very little knowledge of their own philosophy of care or the "meager" regulatory environment under which they operate. How can any of us expect the public to understand hospice when hospice (largely) doesn't even understand itself and is incapable of coming to some mutual, standardized agreement on its approaches to patient relations and care? I would rather have an educated patient who won't fight me but may (and should) intelligently ask me to justify my actions BEFORE I do them (just as CMS requires that changes to the hospice plan of care be made known to the patient BEFORE they are carried out). I would not want to have a patient that would blindly follow me and/or that was left so ignorant (by my withholding of information) that they either followed or fled out of fear. "Trust me" means nothing coming from a total stranger in any capacity.
  • Sara Buscher
    As I patient I really want my doctor, the one who has been there with me through the ups and downs, the one I've grown to greatly trust be with me to the end as my primary hospice medical director. I've been I have the right under Medicare to pick who will be my hospice medical director.
    • D Someya Reed
      ...And you should have your doctor with you not only because you want him/her but because your doctor wants to be there both with you and caring for you. Everyone else should fully support you both in this relationship. It's not happening now. But I, for one, will continue to fight with those wanting to see you keep your doctor and against those who try to use any way to exclude him. Be well.
  • Colleen
    Thank you for your insightful comments. At our hospice, the PCMD often follows his/her patient, but just as often does not. Going forward, I will be aware of the PCMD's feelings and ask him/her, Doctor, how are you?
  • You are a unique oncologist who desires to keep in touch with one's patient when you don't HAVE to do so. As a hospice worker, all I usually hear is that the nurses can never get in touch with the doctor and when they do, they seem to be annoyed with their phone call. I would say that you should absolutely be in touch with the patient. You have their phone number and they would most likely LOVE to hear from you. You are also welcome to make contact with the hospice organization to which your patient was referred. Our triage nurses would most likely fall off their chairs if you were to call and ask after a patient!
    • James Salwitz, MD
      Good advice. Perhaps I need to reach out more often. jcs
  • Katrina
    I am a hospice representative for a small non-profit hospice organization. We don't have the big bucks in our pockets to lavish our referral sources with 5 course meals as a way of showing our appreciation for referring a patient to our program as the larger, nationwide corporations have. We don't invest our profits in to stocks. Instead, we write thank you cards to physicians, check in with them frequently to see how they are doing and how we are doing, follow up with them once their (notice I say their) patient has passed to see how they are coping and to see if we as their partner in care may improve next time around, and we invest our profits in to our company to provide more programs/resources to our patients and families in addition to the standard hospice care that all hospices must provide. Prior to working for a non profit, I worked for one of the largest for profit hospice agencies in the country. They are numbers driven, we are care driven. I would never go back. I was very happy to come across this thread. The comments justified for me the reasons why I would never go back to the for-profit world. Truth is once the patient comes on service with a for profit hospice, those companies are all about getting reimbursed. To hell with everything and everyone else! I must say that the aforementioned comments depict the exact culture that I previously worked in. There are very good hospice providers out there, I will leave the organization I work for out of this because in no way am I trying to sell anything. But your best bet would be to research your local not for profit hospices. For profit hospices have sales reps that get commissioned a dollar amount (typically something like $100) per patient signed on service. They pocket the money, then on to the next! I used to be that sales rep. I'm still technically a sales rep, but without the monetary bonus per patient. The bonus for me is that I was able to assist in helping a patient, family, and the primary physician in a journey that would be much more difficult without hospice. At the end of the day, that is more than enough. Thank you, Dr. Salwitz, for sharing your thoughts. I am saddened to see that you have not been thought of by who you entrusted to care for your patients. My heart goes out to you for each time you've felt that emptiness and I pray that the right hospice agency for you comes to light much sooner than later.
  • Iris
    I had seen my oncologist last week mostly just to talk. I am a palliative patient dx with stage 4 luncg cancer, NS, aden and systemic lupus. I was dxed for LC in 2012. Due to my body, I was only able to do chemo two times and then I stopped. I don't cough, and no pains. In Feb, 2014, I had an accident and fell off my bed and part of me underneathe the bed. It was almost 3 days until my son found me. The doctors told my children and brothers that I had a very poor prognosis and it's time to call family. I went to rehab for a month and saw the MD apparently in charge of me. I asked her if I was getting better? Her reply was: "as I told you in the hospital, you have a poor prognosis. " I did get upset because I was busy hallucinating and never saw her in my life! Each day in rehab, I was getting better and better and was finally sent to live with my son. When I went last week to my oncologist, he said that maybe its time to contact hospice. Does that mean he thinks I'm dying again? I don't lay in bed but go shopping with my caregiver. I bought a smaller house. Everyone wrote too many words to understanon the blog. Why is it time to contact hospice?? Can someone reply please? Thank you
    • It sounds like you need to sit down with your physician and get your questions answered. Do not go by yourself. Having someone else there to help with questions and also to listen with you, will be very important. Even if it is just your caregiver, a second set of ears is vital. The other people you could talk with could be your family doctor, or perhaps the intake nurse of the hospice might be able to fill in the gaps. Hang in there, ics
  • […] while a hospice doctor and nurses take over. Some would say a hospice doctor is only very loosely involved in caring for a patient, leading to one pitfall of the whole idea of attentive care. Sick patients […]

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