Hospice Patients Alliance: Consumer Advocacy

Comments on Hospice Administrator's
Email Protest of USA Today Article

We are quoting below a letter from a Hospice Executive Director, since it is typical of the type of protest that regular industry representatives make when they hear any news about "problems in the hospice industry." They always state that such problems are "rare," that it is irresponsible to publicize such problems, and try to insult those who bring the truth out in public. We have responded to this typical letter to provide a response before the industry makes it's protestations in public (efforts to suppress the truth).

See below for content of letter from Phil Thompson,
Executive Director, Hospice of the Ozarks

Dear Phil,

First of all, you know that there are hundreds of positive articles about hospice all over the country, in both national and local papers. The USA Today articles of August 20, 2001 stand in stark contrast to so many others. If your program is being run on an ethical basis, your reputation will not be damaged and patients will know that you run a hospice that really cares. People know what is going on. The type of problems encountered in hospice are known to the public. If you aren't aware of that, then you are out of touch with the public. We hear from people all over the nation, and they know what is going on.

You know very well that there are some problems in the hospice industry, even "many" problems, ... even "thousands of problems." Even the US OIG has pointed out intentional fraud in many hospices. That is no secret. I have had hospice administrators themselves call us up and tell us they know that there is a problem in the industry. What you and other administrators like you don't really get is that there are administrators who are not like you and don't care about the ethics you obviously adhere to, and families and patients all over the nation are getting exploited and suffering deeply due to transgressions not only of standards of care, but of ethics, law and morality.

Hospice agencies like your own need to wake up to the very big problem of fraudulent services in rogue hospices. What that means is that many hospices are not providing the services you state you provide and do not adhere to the standards you care about and that the public cares about. What does not help, is for the public to be uninformed about the problems they may encounter and what to do. The public can stand the truth and make up their own minds about what to do about it.

Are you calling people who encounter severe problems or fraud and worse in hospice: "liars." If so, then I say, shame on you! These families have been deeply damaged by problems in hospice services, on top of the loss of their loved one. The hospice setting is a very special setting in health care and involves one of the most intimate times in the lives of people: that of the death of a loved one. The families will remember what happens in hospice for the rest of their lives! If something terrible goes wrong, then these families are impacted forever. Not only the adults, but children and grandchildren are affected. And if the patients themselves don't get the care they need, they suffer needlessly. Many hospices need reform to return to the original mission of hospice.

Many hospice agency administrators who find a family that knows something went wrong in the hospice services, will tell the family, "you're having a difficult time grieving," ... "we can provide counseling for you," but the hospices almost never admit their mistakes. When a hospice has actually seriously violated the standards of care and damaged the patient or family in their lack of care, or by providing poor care, it is incredibly insensitive and outrageous to suggest that family members are "having trouble grieving" when it really is that the hospice "blew it." And, please, please don't tell us that hospices don't make mistakes, even very serious mistakes. What about overdosing patients and then covering it up? Or not providing all the services that the patient and family are entitled to. These are common problems in hospice.

Calling the state inspectors when a family is dealing with their loved one in the dying process, and having problems with the hospice itself, is not helpful at all in the short run! Why? Because the state may take six months or more to respond. That is common in many states. The patient has already died long before the state ever responds. So your suggestion is completely useless for the patient and family who are still in the process, dealing with a rogue hospice or incompetent (or worse) staff member. These families have had no place to go to, to get immediate help in dealing with a rogue hospice. That's where Hospice Patients Alliance comes in, to help the families communicate with the hospice, let them know the family is aware of the standards, and help them obtain the proper services for their loved one. We have helped thousands of families over the past few years.

I have personally witnessed corrupt policies intentionally put into practice, which affected hundreds of patients adversely, and the entire board of directors and hospice administrators not only knew of the fraudulent policies, but instituted them themselves.

No, what you don't realize is that the public already knows about these problems and there is a strong undercurrent of suspicion when hospice represents itself as "pristine and pure" compared to other niches in health care. It is completely irresponsible for hospice agencies to pretend that serious problems don't exist in the industry. If your hospice subscribes to the standards of care and follows that, then your reputation will grow in comparison with the abominable "care" or lack of care some hospice agencies are providing or not providing.

How many families do we have to hear from, who tell us their terminally ill loved one was thrown out of hospice, because they lived too long, or because they were on TPN, or because they had to go into the hospital. Why did they, in some cases, have to go into the hospital? ... because the on-call hospice nurse never came out, even though frantic family members called over and over again. We hear about such problems over and over again. Not all hospices are run the way you state you run yours, and believe me, I know there are good hospices out there. But the public that runs into the "rogue" hospice is completely blindsided by absolutely corrupt policies and lies by staff about what will be provided, and the staffing provided. When the hospice does not come through, the family is left in a crisis made worse, because they trusted that the hospice would be there.

There are thousands of such cases, and if you really don't believe that, you are completely naive.

In addition, the number of complaints we get about patients being put to death by hospice nurses is astounding, and we are not talking about patients with pain. I'm talking about patients with no pain being given large doses of morphine, or potassium with no medical need, or being sedated into terminal sedation/comas and dying way before their natural time.

Hospice is about supporting the patient and family in the dying process, caring for them, loving them, helping them go through the process of saying goodbye, but not hastening death. Many hospice nurses are actually hastening death by overdosing patients with unnecessary medications. In other cases, some physicians do not order adequate pain medications to control pain and patients may suffer needless agony, though they came to hospice to get symptom relief. How many hospice nurses call a physician in their community who refuses to provide adequate medication? Many. There are probably a few doctors like that in any major city.

And what do hospice administrators do when the nurses can't get the orders needed for the patient? Well, the medical director, according to the regulations, is supposed to intervene on the patient's behalf and order medications if needed. In some hospices, the hospice does nothing. Why? Because if they "offend" the under-ordering physician, he may not refer patients to the hospice and their census could go down. So, the patient is abandoned basically, in their need for pain medications and the hospice keeps a good relationship with the referring physician who is a source of patients and thereby, revenue for the hospice. I have directly seen that for myself, so don't tell me it doesn't happen.

The good hospice administrators in this country should wake up to the fact that opportunists have entered into the hospice arena, who don't give a hoot about patient care, but look at it as a way to make money. A good friend of mine who is a director of nursing for a hospice, tells me that her hospice cannot make a lot of money, but they provide all the services, meet the standards and break even. She is distressed that other hospices do not meet the standards and intentionally violate them for financial gain. We are not originating the idea that there are problems in hospice! We get reports of this from hospice administrators, hospice nurses, staff, social workers, therapists and even volunteer hospices that observe all kinds of violations in our nation's hospices.

We receive confirmation of these problems from some of the most well known hospice industry reps, but in private. They will not admit it in public, but on the phone, they admit that they also know of these problems.

What hospice agencies need to do is expose the corrupt "wolves" among the sheep. It is a terrible thing for a family to face corrupt hospices when they are having a hard enough time dealing with the death of someone they love deeply.

The public has a right to know what is going on. Sorry that you don't like to admit the truth. I have had many contacts with spiritual counselors and others in hospice who know these things are true. It may not be true in your hospice, and again, as we say throughout our website, there are many fine hospices and professionals out there, but if a family runs into the other type, then we tell them: "these are the standards, this is what to do." "Communicate with the RN, the hospice director, etc."

You complain that "the main beneficiaries from these stories will be the law suit hungry attorneys and possibly your organization." You should know that you are a paid employee of your hospice. How much do you get paid for your work? Do you have a problem with our organization that does all its work on a volunteer basis? We don't stand to make any money out of this ... all donations go to cover overhead costs of serving the public. Many thousands of hours have been put in, helping families and patients all over the nation, who call in and complain that they are not getting the care their loved one needs. Often they are not only deprived of care, but actually lied to by hospice staff about the standards of care! We simply provide copies of the actual regulations so the public knows what the truth is. None of our staff have been paid a dime for our services. So, if anyone needs to feel shame, it is those hospices that take the money from our state and federal governments out of our taxpayer dollars, and then stuff the money in their pockets while depriving patients of needed care!

You state that saying there are "thousands" of such cases out there is "irresponsible and unsubstantiated." Well, the fact is that there are thousands of cases out there. There are over 3,300 independent hospice agencies in our nation with thousands of staff involved, and about 700,000 patients enrolled in hospices. Even if only one percent of those 700,000 patients had horrible experiences in hospice, it would equal 7,000 patients. And one percent is the minimum number of patients and families who are not satisfied with hospice care, even according to hospice organization statistics. If the major hospice organizations admit to at least one percent, admitting to 7,000 unsatisfied families, it is very safe to estimate that the numbers are much, much higher. What is needed is scientifically conducted random studies to find out the real percentage of hospice patients/families who are dissatisfied.

Yes, we agree that many hospice staff are some of the most dedicated health care professionals as we say throughout our website, and we agree that many take great pride in doing the very best they can. However, there are some who do not subscribe to or practice in accordance with the standards of care, and that includes directors of nursing as well as some administrators. If all the complaints about hospice were added up, honestly and objectively, there would be thousands and thousands of complaints from families all over our nation. What is irresponsible, is to pretend that the problems are not serious or do not exist. They surely exist and you know it! When our nation's families depend upon hospice, then they should be able to trust that they will get the type of care that is ethical and which remains true to the hospice mission.

The problem is that some hospice directors don't follow the standards. They only try to pretend they do in their PR. What do you say to the 39 year old cancer patient who is refused entry to five different hospices because she is on TPN? What do you say to the patients who are discharged after six months, even though they are still terminal? ... and the families call here saying, "what do we do now?" "They dumped my father and we have nowhere to go?" What do you say to the patients who call and say their loved one died in terrible pain? or to the family who calls and says "the hospice nurses don't come out when we call" or "they say they'll be there in a couple of days" when we're already in crisis"....

No, sir, these problems are real, very real, and there is a very real problem that you obviously cannot believe exists, simply because you believe others are as ethical and caring as yourself. Life, however, in the real world, involves all types of people. There are opportunists out there in the hospice agencies, and the sooner you and other administrators realize it, then you can correct your own industry from within.

Ron Panzer
for Hospice Patients Alliance

Phil Thompson wrote:

"One of our hospice board members came by and showed me the August 20th USA Today articles about hospice. We were quite conerned about the one-sided, unfair representation of hospice care.

"Yes, there are some hospice problems out there but the vast majority of hospices do a great job of caring for people in their end-stage of life. I wonder how many individuals throughout the country will not avail themselves of hospice care now because they are scared to use the services as a result of these negative stories. I think your comments about "thousands of cases out there" were inappropriate and unsubstantiated."

"Our hospice started in 1979 and was an all volunteer for several years before we received Medicare. Our agency is a hospital based non-profit agency which has an excellent reputation in the community and we are very well staffed with no staffing shortages."

"The main beneficiaries from these stories will be the law suit hungry attorneys and possibly your organization. The hospice licensure agencies in each state should be the ones notified about inadequate care and the hot line number is what should be educated to the public. A family member should act before their loved one dies because at that point, there are few options left and they may make decisions out of guilt or grief." -- Phil Thompson, Executive Director, Hospice of the Ozarks

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Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms.

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