In response, hospice and palliative medicine clinicians start to babble and spit. 29% of patients are referred to hospice in the last 3 days of life. If a patient is old or a minority, they are not likely to get pain control. 70% of advanced lung cancer patients think they are curable. Patients often die in hospitals on machines, not in their homes, as they so desperately wish. Hundreds of billions of dollars are wasted on futile care. How can cancer physicians be so deluded?
The end-of-life folk and the cancer docs scream back and forth, each believing that they are righteous, that they have the patient’s best interests in mind. A failure to communicate. They are both right.
Cancer doctors step in at what is often the worse part of a patient’s life; the moment the patient learns they have a horrid disease. Oncologists make the original diagnosis. They tell the patient. They design the therapy. They tell the patient. They deal with the heartbreak of relapse. They treat the nausea and vomiting and depression and diarrhea and mouth sores and fear and anger and pain. They fight, along side the patient, thru surgery, radiation, chemo and never-ending complications. They are friends, counselors, guides, teachers, shoulders to cry on, even preachers, but also scientists, clinicians, and, of course, torturers.
When, the palliative doc correctly points out all the additional things that can be done to help patients at the end-of-their-life, it is heard by the oncologist as an indictment, as failure. Despite devoting a career, 80 hours a week, year after year, trying to help and heal, they are told that they have failed, that they are doing a bad job.
There are wonderful and special opportunities for patients using the ideas of palliative and hospice medicine, but front line physicians who have given their all, who may have relationships lasting years, feel guilt at the accusation, at the realization, that they might, just maybe, have allowed or even caused unnecessary suffering. Deeply committed to their craft and to their patients, this idea is painful for them. Their response is an important warning.
The methods and availability of patient centered supportive medicine must continue to spread. Better communication, patient control, improved symptom management and expanded options. These ideas must be implemented, not just by palliative specialists, but must complement the work of caregivers already in place, who have devoted their lives to this battle. By being aware of their motivation, their place, their commitment, we can work together, as a team, to deliver quality throughout life, through all phases of care, even to its end.
Carolyn, when you read my response I hope you will not be offended, It is a truthful account of my experiences.
I try very hard to understand Hospice and Palliative Care. In truth these industries are enormous cash cows for the business owner who is usually not a healthcare professional and the physicians who work for them. I know this will be an unpopular post. Let me preface this by saying I do believe in the promise of this industry. I have had three experiences personally with this industry. In two situations, very close relatives were referred to Hospice by physicians with financial ties to the Hospice. From one we received only occasional care from providers who were in much too much of a hurry to get to the next patient, spending time reviewing the chart, spending no time with our relative and then sending a hefty bill. The amount charged was beyond ridiculous for the service received and came to more than $40,000.00. In the second instance the Hospice provider sent obviously tired, overworked and untrained "nursing staff" consisting of vocational nurses. We did not receive a visit from any other staff. They did not interact in a positive way with our family, most just sat in the other room doing paperwork and then were on their way. Again there was an enormous bill involved for services that were dubious at best. In both situations our relatives were asleep during these visits 90-95% of the time. This makes absolutely no sense. My last experience with a provider going into Palliative Care was a physician with no experience, training or background in Palliative Care moving from one lucrative position to another.
My thanks to yoga-mom 2: We do not have people in place to police greedy and careless hospice facilities. Patient's families need a place to complain for instant enforcement. Where is that place!
My late friend was met with fury from her oncologist when she refused to have chemo as her recurrent long cancer was widespread. She was given about three months but lived 18, mostly very well, she was frail but sharp until a few weeks before her death when it spread to her brain. She was not in pain and had good palliative care. She preferred to have a reasonable quality of life than suffering for quantity when she couldn't be cured.
Medical care is really medical business. We all should make our wishes known in writing, by video, by hiring advocates - by whatever means possible. Because when you get sick and you get terminally ill it is very unlikely that you will get the care you need and want. The best you can hope for is "to die in your sleep." I expect patient assisted death will become more common - as that is a logical means to have control over how you will die. And it make the most sense to me. Hopefully you will have at least one friend or family member to be there for you. Don't expect any health care professionals to really be there for you.
I appreciate so much the comments above -- especially the ones that don't match my experience. We all need to have more exposure to the wide variety of trajectories and outcomes in terminal disease situations. My own experiences with hospice have been amazingly wonderful. Both times hospice care has been offered by a department offshoot of the local hospital. Both times the patient was seen for evaluation within 48 hours of the doctor's referral (though once it took us 3 days to get the doctor to write it!). Both times the first nursing visit was conducted as a relaxed hour with an RN meeting with patient and chief caregiver to discuss care in detail and answer our questions. In both cases we had trained volunteers visiting two or three times a week for caregiver respite and sometimes light housekeeping support -- running the laundry or cooking a pre-organized meal for the patient. Having worked in a busy ER and seen the nursing home patients transported to our noisy environment rather than allowed to die peacefully in their familiar surroundings, I could echo a lot of what Carolyn has to say. And I am so sorry for Yogamom2's experiences. None of this @#$ should be happening.
In over five years of study and interviews, I find that hospice spends far too much time on their own “team” dynamics, a little less time but still too much on family members and the least amount of time with the dying patient. If any hospice doctor or nurse wants respect, this should be the exact opposite when under their watch. If any hospice doctor or nurse is looking for respect as their primary concern, they are in the wrong line of work. Any hospice worker (even in marketing) who approaches anyone in the medical industry and complains that patients are not being “shared” hasn’t the faintest idea what hospice is and what is currently required of the patient to use it. Hospice is no one’s choice but the patient’s. To state, suggest, imply (or anything else) that curative based doctors should “share” patients is the same as asking them to convince their patients to just go home and die. If I were asked this in a professional capacity, I would be insulted and angered by the request and the requester. The patient’s choice to elect hospice currently (and with few exceptions) comes with a heavy price. The patient must decide to “forego” (a fancy word for “give up”) curative treatment, accept their own imminent death and allow their condition to run its natural course. For making this choice, they receive some DME (durable medical equipment), access to predominantly (and not all but certain approved) pain relieving drugs (opioids/narcotics) and some help around the house. There are no guarantees of final trips, final wishes or anything else…that is the bailiwick of another service or, if done, is at the discretion of each individual hospice. The patient may also lose access to certain medications and procedures they have needed up to this point even when they have been shown to be of benefit and of a palliative nature. This is because of the cost cutting benefit (to Medicare) that allowed the Legislature to approve hospice back in the early 1980s in the first place. This brings up an interesting item because hospices have repeatedly stated that hospice is not about “giving up.” Yet, in an NHPCO press release dated March 18, 2014, this is exactly what NHPCO President Don Schumacher now stated when he said that for too long the election of hospice has been “tantamount to giving up.” How does one reconcile the years of telling people that hospice is not about giving up then claiming it is about giving up when it suits current needs? This being a letter of support for a 15 hospice test run of concurrent palliative and curative care to see if both can be done cost effectively under a little known clause in the Affordable Care Act. Cost effectiveness, I don’t doubt, will most likely trump patient benefit should it come down to that. Why can’t doctors, nurses and hospices quit sniping at each other, back-stabbing each other and crying about hurt feelings and instead concentrate on telling their patients the facts so they can make a truly informed decision? Why is this so difficult for all of them?
Thank you for posting this. When you mention Hospice marketers, please understand that the sales force does not have even the remotest idea what Hospice means and is paid per referral. They will say anything to get this referral. You do a magnificent job of explaining the situation faced by a terminally ill patient. Thank you for this. We need to be patient focused and provide patients with the truth so they can make their own decisions. We need to be wary consumers of Hospice and Palliative Care services. Where I currently live, large providers of Home Health Care that are already corrupt are buying up Hospice providers simply because they are so profitable. They have no experience or expertise in the area, simply motivated by profit. This is the wave of the future in Hospice and Palliative Care, everyone needs to be aware of this.
Your welcome and thank you for the kind words. The only reason I know anything about hospice at all is from the abuse my wife (and our family...but most importantly her) suffered at the hands of bad hospice employees with bad management driving and supporting them. Ours was not the "evil" for-profit hospice but a non-profit one. You see, both have the same need to make a profit. One just gets some tax benefits. My wife's case was described by Health & Human Services in Wash. D.C. as "The most horrific case of abuse by a hospice against a patient in the history of hospice in this country." They said this but still will not do anything about it. Note: for more on that, please read my reply to Margaret Fleming above. There is so much the average person does not know about hospice. Based on five years of attending every hospice hosted event I could find and asking questions at each, I can confidently say that most hospice workers don't know much about hospice either. I have to wonder...why do they so often send out their least informed to "educate" the public? People need to know that even something as simple as the Hospice Patient Bill of Rights is not legally enforceable. It is for hospitals, nursing homes, etc. but not hospice. When priority is given to investigating malfeasance, hospice is always at the bottom of the priority list. Why is that? We'd hate to think that it's as callous as "Well, they're dying anyway" but that's exactly what I have been told by by some people in charge of hospices and relevant government agencies. Here in California, there are no laws regarding hospice (except for licensing), no fines for any wrongdoing (hospitals & nursing homes can be fined up to $100,000 per occurrence). Not hospice though. And yet hospice is the only "medical" industry that has no ability to fix a problem they create or a wrongdoing they make. How do you apologize to the dead? How do you make things right for them? How many hospices do you know that ever owned up to their own mistakes? Do we really want to believe that our leadership and even a single person in a single hospice is saying, "Well, if we just wait long enough the problem will resolve itself on its own." Currently, that problem resolves itself (through death of the patient) at a median (average) of 19 days. In California if you submit a complaint about a hospice you'll receive a form letter that states that the L&C does not even have to begin investigating your complaint for 45 days. At a median average (same amount below and above) of 19 days, how many hospice patients will die before anyone even inquires as to their problem? This and my wife, using what precious little time remained of her life, asking me to do everything in my power to ensure that no one else would ever again suffer her fate at the hands of a hospice nurse is what drives me to do what I do, to speak out when most everyone else is silent on the subject of hospice. Hospice is neither populated with all angels nor all devils. But let me ask you, do you want (for yourself or a loved one) to be the person that gets the one bad employee in an otherwise good hospice and then realize that all you had to do to avoid it was a little proactive homework and ask a lot of questions? The hospice industry says that we deserve them and their services at end of life. I believe we deserve better.
Hi, I have to agree, even the Hospice workers themselves are ill informed. Thank you for your informed response.
Have you ever met with any of your State Representatives to get the laws in your state changed. I just had a horrific experience with a loved one and hospice in my state. There is absolutely no legal recourse here, so I am considering starting a grass roots effort into getting the law changed. Cancer patients are still people and those that willfully neglect their care should be held accountable.
Hello, You have an excellent suggestion! May I ask what state you are located in? It is important for the voice of reason to be heard. Like you, my personal and professional experiences with Hospice care have been sobering. Overworked, underpaid and poorly trained low level providers who simply make a visit so the corporate owner can collect the fee. It is a money driven process and serves only the corporate owner. The provider and patient are ignored and at times humiliated. Thanks for your insight.
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I think hospice is under federal guidelines, but its medicare related. What about those who are not medicare recipients? I will have to check into it further.
Maryland. It would be great if we could team up with others from our own state and decend upon the State Legislature together. I don't think the average person is aware of these problems, and if they were aware, they would demand change. No one can go through life not having themselves or a family member facing end of life care and the difficult decisions it requires of patients and their families.
I live in CA. I think the situation is at least as bad as in your state. In CA most of the companies doing Hospice and Palliative Care are large corporations who simply are in it due to high levels of reimbursement and low levels of oversight. These are federally funded programs, not paid at by the state level as far as I know.