Can hospice fix America?

Posted by on Apr 10, 2014 in End of Life, General Medicine | 12 comments

Can hospice fix America?

America is one of the sickest places on earth.  We have the best diabetic care, but the most diabetes.  First-rate cardiac care, but we are obese, hypertensive, inactive, and have high rates of heart disease.  We are the world’s standard for cancer technology, innovation and access, but we have high cancer rates even while we waste most of the money from cigarette taxes on road repairs.  At every socioeconomic level, we are sicker than other “modern” nations. We spend the most, get the least and die first.  Home of the free, the brave, the sick … come to America for the most sophisticated medical care anywhere … you are going to need it.

As revealed in Bradley & Taylor’s groundbreaking book, The American Health Care Paradox, in comparison to most industrialized nations, we have a failing health system.  We have a “fix-it-when-it-breaks” motto, instead of preventative intent.  We spend the least on support for seniors, disability and sickness cash supports, health education, nutritional programs, family programs, housing, environmental standards and social services.  We have the most infants living in poverty. In our never-ending search for individual freedom and profit, we neglect population health and focus on disease.  Americans ignore the individual until he or she is so sick that we all to pay for it.

Infinite dollars, scientific innovation, health insurance reform, and educating more doctors, will not fix our dysfunctional “system.”  Only a prime focus on health, not disease, can do that. Perhaps the hospice model of care offers lessons toward a solution.  No, I do not mean “give up” and put everyone on terminal care, but rather we can learn from the basic structure and concepts of palliative and end-of-life care.

Hospice begins with realistic and appropriate education. Practitioners believe that patients and families adequately and fully informed about their choices will make the best decisions.  An empowered and educated patient will accept natural limits and focus on quality life and goals.

Next, hospice uses a team approach; it is coordinated system of care.  Unlike physician centric American medicine, palliative care believes that so many changes happen in life that a single visit to the doctor for 10 minutes every three weeks focused on the diagnosis is grossly insufficient. Therefore, hospice use nurses, social workers, pharmacists, doctors, clergy and lay personnel as a team to address the complexity of real life, near its end. This model gives the patient independence by access to a broad range of critical services in a holistic approach to life and wellness, instead of a focus on sickness.

Finally, hospice believes that rational, realistic and optimal choice is often low tech, low cost and high benefit.  Quality of care can be achieved by optimizing health, responsible nutrition, being in the home instead of a medical institution, a positive social environment, limiting depression, controlling disabling symptoms and avoiding invasive complex technology.  The palliative care approach to support and health can extend life and quality at greatly reduced cost.

This systemic model; high education and personal empowerment, a team of health providers of many specialties, improvement in quality, cost and outcomes through a rational, practical and realistic approach to choice and goals, has a great deal to offer.  While not perfect, hospice has shown over the last 40 years, in contrast to most of the health care industry, that it can deliver gentle, quality and life extending care at low cost, in a compassionate manner.

Perhaps the next health paradox will be that those who dedicate their lives to providing holistic end-of-life care for patients with diseases our society did not prevent, can guide America toward a path to prevent illness in the first place.

12 Comments

  1. This is a very excellent blog and so true of our healthcare system. Thanks for saying what needs to be said…more people should listen

  2. The notion of applying the Hospice model of care to the health care industry sounds like a good idea to me.

    A typical doctor’s appointment last about 15 minutes and during this time the patient team strives to cover the questions they have ready to ask. As the meeting progresses the patient team then strives to understand and record the doctor’s comments. It all seems to be over too fast leaving the patient team to struggle to interprets the notes they took.

    When we first received a recommendation for Hospice we were very upset and felt in a state of panic. We thought our lives and home would be invaded by strangers and our daily routines would dramatically change. What we found was a very compassionate case nurse who arrived and spent a good deal of time with both of us. In our case she recommended a home health aide to come in a few hours each day to allow me, support team, to get a break.. We soon came to know the nurse and home health aide well and realized they complimented our lives often offering support as needed. The nurse would visit every week and call in between. As things got worse health-wise their support increased, but in a way that we really did not notice.

    Being in this situation is like being in a dark room with little reference to reality. Having these professionals around provided us with guides we needed to find our way through the darkness.

    Throughout this time a social worker and a religious councilor came to offer help.

    .

  3. You forgot to list taking politics out of health care. As long as people with some of the best insurance in the country, with enough money that neither they nor their children nor grandchildren will ever have to worry about paying for care they need are the ones making the rules, there will not be change. Why? Because in the words of one politician (in this case the debate was over the financial dismantling of higher education in that governor’s state, rather than health care but the underlying attitude is the same) when asked about wasn’t he worried about what he was doing to higher education in his state, he replied, “No, my child is going to private school”. As long as enough of those in change have that attitude nothing much will change…ever.

    • can’t type… meant to say as long as enough of those in CHARGE have that attitude… I wish they’d change LOL

  4. In the United States there is no “health care system.” We must deal with an abundance of competing medical/health care businesses and profit centers. Some wonderful people work for (and even operate) some of those centers, and our odds are better with them, but they too are stuck. We really don’t have “first-rate” diabetes, cardiac or cancer care or prevention (because that would involve thorough community-based changes – where’s the profit in that?) but we do have really good gadgets and gizmos (if they are also profitable) and then for those who can afford them, one way or another.

  5. The answer to your question…Can hospice fix America?…is no.

    Hospice suffers from the same problems as every other medical discipline. Where you say physician-centric, hospice just makes it RN centric. The nurse is most always the team lead and, if you talk to many hospice team workers, they will pretty much consistently tell you that what the nurse says, goes. One lead centric individual has simply been replaced for the other. As we usually do, we collect and wield power available to us sometimes appropriately, sometimes not. The hospice team members are all supposed to be equal. But, remember those meetings where you were told “there are no titles here?” How many team members were ever willing to speak out in opposition to the CEO’s opinion? How many Home Health Aides or Spiritual Counselors do you suppose speak out against the Nurse’s opinion even when their input would benefit the hospice patient?

    Hospice is not consistently implemented. Other than Medicare’s billing rules, there are very few (in some States) to no legally enforceable rules (in others) for hospice other than State laws applicable to anyone in the public but usually even those are not enforced against hospice. No one wants to believe that any hospice would ever do anything to harm or distress a patient…yet it happens and just as frequently as it does in hospitals, doctor’s offices, nursing homes, etc. The difference being there’s no requirement (enforced anyway) for hospices to report anything but the “good stuff” and allowing them to therefore suppress all the “bad stuff.” Seems that would be easy to check as most hospices bill Medicare but no one checks to see that statistical reporting is consistent with billing. Unless, of course, Medicare through OIG inspections believes there is money being improperly acquired by the hospice. Hospices then are left to pretty much do things as they see fit based on their years of saying that we (the dying) are each a unique case then the hospice team (led by the RN) tries to pigeon-hole you into a standardized format for equipment, whether you need it or not, and proceeds to “educate” you on how the dying process will go for you. They can’t possibly know that except in a very general sense. If you read some of the “memoir” style books available and authored usually by hospice nurses, you will find stories of nurses telling patients what to expect after death, who they will meet, and even a play by play of how a patient will falter. Again…they can’t possibly know this but we (the public) largely believe it because we WANT to believe it and believe that ALL hospices are going to do right by our loved ones. I would love to believe this too but it’s not reality.

    Most statistics for medical disciplines/facilities report stats such as…for every reported case of abuse, six more go unreported. I heard this one from a nursing home executive director while he and I were testifying before a joint commission at my State capitol. Do you really suppose that hospice, populated by some of the same workers that used to be in nursing homes, SNF’s or hospitals are producing significantly different results? Have you read some of the statistics and investigations of medical workers and how their substance abuse, psychological, etc. problems are handled and the rules for disclosure/non-disclosure to other medical facilities for those terminated because of them? I’ve talked to the local and county ombudsmen and got an earful of complaints with respect to hospice that they couldn’t do anything about because there’s no agency to do anything about it. Sure, each State has a licensing department that is supposed to handle complaints but how many complaints do you suppose they actually investigate when priority is given to hospital, nursing home, home health and then, if we have any time left, hospice patients. Not to mention that this complaint resolution responsibility was forced upon each State by Medicare…probably because they themselves didn’t want to do it.

    Then you have the hospice associations reporting on the meager statistics that hospices across the country (for instance, in the case of the NHPCO) supply…”voluntarily.” It’s all voluntary reporting because even when it is required, these same hospice associations will admit it is very difficult to get hospices to supply even that little required data. So you get annual reports like the NHPCO puts out that are nothing more than estimates of estimates of estimates. Just read one and see how many times they use the word estimate in conjunction with their “statistics.” A valuable statistic in my mind would be not only how many people were discharged from hospice each year (which they state and it’s generally in the high teens percentage) but WHY they were discharged? You know that they (the hospices) know. But reporting that wouldn’t necessarily be favorable so they simply state that they were discharged for reason such as…and only state the non-controversial ones…and then will put out statements in brochures that people sometimes get better and leave hospice. An exaggeration when you’re talking about a dying patient stabilizing (plateau) and no longer qualifying for the hospice benefit as opposed to someone who truly got better. Forced discharges or people who are frustrated with hospice and leave on their own are not even discussed.

    Lastly, before I pop a blood vessel, I keep reading arguments between the non-profits and for-profits (hospices) to the detriment of both and arguments between the palliative care folks and the hospice folks as to “who came first” and “who is a subset of the other” or that they are so different that there is no common ground between them. None of these arguments matter to either of the disciplines or to the patients they serve. Yet they still keep having them.

    Hospice will never show its true value until, in the words of our radiologist, “they get over themselves.” Don’t get me wrong, there are many good, ethical, honest, dedicated people in hospices. Unfortunately, the only one we actually saw was a Home Health Aide who was terrified to speak up because the team lead RN historically would beat her down for it. The others we actually had in no way fit any of those adjectives I just used above.

    No! Hospice will not save America even though the philosophy is good. The implementation is bad (even though there are pockets of good). Hospice will truly grow and improve only when it comes clean, stops lying with statistics and embraces its own denial of its true self under the “everybody set your own rules” guidelines it currently operates under. What hospice has evolved into over these past 40 years is nothing like what its founders intended from what I’ve read of their philosophies and in their own words.

  6. Forgot to address this one passage you wrote and this is important. You wrote:

    “Hospice begins with realistic and appropriate education. Practitioners believe that patients and families adequately and fully informed about their choices will make the best decisions. An empowered and educated patient will accept natural limits and focus on quality life and goals.”

    That’s right and that’s “textbook.” A while back, I set out to find how true (in the real world) this actually is and how it coincides with hospice’s claim of patient autonomy…”you are in charge of your own care.” I talked again to hundreds of hospice workers and industry professionals.

    Well…results when implemented were not so textbook. Almost to a person, they would state (and I’m paraphrasing) that patients are directed to see things the way the hospice does (with regard to the patient’s care and needs) and if the patients/families do not agree the hospice workers are to strongly point them in the “proper” direction. This then would revise “textbook” above to be something more like:

    ‘Hospice begins with as much realistic and appropriate education as the hospice feels is needed and determines the patient can handle. Practitioners believe that patients and families adequately informed about their choices will make decisions consistent with those of the hospice. A patient, empowered and educated in this manner, will accept natural limits and focus on quality life and goals as we have deemed appropriate based upon our expertise and years of experience in end-of-life care. This will lead to a most desirable and cost-effective relationship.’

    This being an amalgam of the similar responses I received from those hospices or professionals willing to speak to me. To the credit of hospice, most WERE willing to speak to me.

    The conclusion though, is that hospice in reality is not “textbook” or like the brochures will claim. But isn’t that pretty much true of any discipline in any industry when it comes to marketing? Build up the good, omit or downplay the bad. It’s up to us (the public) to use critical thinking to recognize what has been left out or skewed so that we can have a true picture of what we should expect from hospice (or any service or even product).

    I can think of no other medical service that doesn’t have specific, enforceable laws and monetary fines for punishment of those who do wrong against patients. Hospice does not have any monetary fines enforceable against any of its actions. A patient or family can initiate a civil action if an attorney will accept it but that’s it. The only enforcement against a hospice is revoking their ability to bill Medicare. That’s not sufficient, just plain wrong and the only reasoning for this lack of fines must be the despicable thing I’ve heard many times now…”Well, they’re dying anyway.”

    • I was told that I have incurable cancer. One doctor said that it is the most corrosive and painful cancer, because of it’s acids.Another doctor told me that it’s the most painful cancer that he’s seen, as after the cancer nodules eat through the bone, they painfully eat through the brain like many Pacmans, until one finally takes out a vital gland.

      So I asked about painkillers and hospice. This insulted the social workers and nurse navigators that I was referred to. I did an online, and clinic search to try to find out about the hospice. It said- when it’s time your doctor will refer you to a social worker, and we’ll care for you. My oncologists were upset about my caustic replies and anger. They asked why I wanted to make a possible visit to hospice. I told them that I should be able to go in, while I can walk-and see if it’s basically clean and if I smell urine, flesh rot, and fecal matter. What was the hospice hiding, and I had a right to plan whether I’d even want to consider this. And they allow only 2 weeks of care in this system, How would 2 weeks help me?

      I went online out of curiosity a few weeks ago- and the hospice is online, with an invitation to come over and visit, so you can try to decide what’s best for you and your family.

      I was told that I shook up the clinic-I guess that my cussing, wall kicking, letter writing, and demanding to talk to supervisors might have helped others.

      Why would we want a hospice system, if the hospices are allowed-possibly encouraged to act in secrecy?

      On the final directive, one of my choices was to be drugged out of my mind. I checked that box. Immediately I was in a loud argument. How would I recognize my family? Didn’t I know that I’d be sleeping or out of it most of the time, blah, blah, blah? I told them that I was diagnosed with one of the most painful cancers, if not the most painful, and does my family want to see me writhing in agony?. No my family isn’t shipping me off to strangers, so I can suffer more. What’s wrong with them?

      • Sounds like a really terrible and even bizarre experience. I have never experienced a hospice/palliative care group that was so insensitive and grossly out of touch with patients and their needs. Perhaps you need to find another hospice.
        jcs

        • Thank you. I don’t have the money for a private for profit hospice. This is the best Senior Care Medicare HMO in the state.

          My doctors-3 of them have shown deep concern for me. One is gathering the documentation of problems of other oncology patients in this system and is filing charges. The most proactive met the others through me. One was a new to the state, a Board certified oncologist, and another is a senior ENT in the system that has been concerned about the lack of pain control and services for head cancer patients.

          It’s so sad, because families have ambulances bring in their stressed and failing family members to the oncology radiology clinic, but he has to send them to main oncology. It is hard to miss the disturbed family at the reception desk.

          While they didn’t have hospices, nurse navigators, or counselors in the 1950s, we knew where to take my father for care when his intestines had a blockage or the abdominal fluid build up became too painful. My father had better administrative care, and we had more support from the oncologists and nurses at the Los Angeles County charity hospital than is provided to the patients of this state. I tell them that.

          I used Email and certified mail for my concerns-so there is a record of my problems with my issues of needing a new oncologist-the treatment by counselors, nurse navigators, etc. They Emailed that they needed to talk to someone-I returned the Email that it had been 10 business days without a response-and the clerks helped me climb up the ladders.

          One of the counselors is now not calling me a trouble maker or emotionally ill. I don’t trust any counselors, but I won’t refuse or be rude to a person that is now nice and helpful. He used to be very rude. So now I smile the best I can and thank him.. I’ve kept contact by updating my living will and DNR-so the HMO can’t pull a Texas on me and my family.

          I just hope that a lot more gets changed for everybody. I’m in my 2nd year of remission-the prognosis is that it probably will return more aggressive in a few years. They say that tomorrow never comes— I have been blessed with these doctors that really care about their patients.

  7. I had a good experience with Hospice when my mother was terminally ill in 1995. The people working for the hospice I used were a blessing and made my life and my mother’s life easier and less stressful at a very stressful time. Everyone was passionate about their work.
    I wish our broken health care system would work on more preventative health care mandates. Let people use insurance to stay healthy – not just when they are sick or dying.
    Til then I think the best health care is to take care of your health and avoid the present health care system.

    • Your final thought (“avoid the present health care system”) reminded me of what one emergency room physician said to my wife on one of her last trips to the emergency room. He said, “Now let’s get you out of here before you really get sick!” He was serious when he said it but the impact on my wife, from his honesty, was profound. It demonstrated not only that he cared but that he cared more about her than protecting “the system.”

      That honesty is sorely lacking from too many professionals in all areas of our present healthcare system. Honesty needn’t be cold or impersonal. It only has to be delivered by someone who truly cares. Those are the practitioners who will do it well…whether trained in “proper delivery” or not.

      I’m glad to hear that your mother (and you) had the good fortune of having someone who obviously cared.

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