Hospice Patients Alliance: Consumer Advocates


Hospice Patients Alliance
Emergency Answer Center

Hospice Emergency Answer Center

May the path you choose
bring peace and comfort
to your loved one!


There are many wonderful hospices in our nation, and there are many wonderful hospice staff serving the public who are extremely dedicated and caring. However, there is another side to health care: the following are actual questions commonly received here at the Hospice Patients Alliance. We provide these examples here so that perhaps you may find an answer to questions you may have about your situation. You can quickly scan the topics by scrolling down to find the red word: "Question."

In some cases, problems arise from simple errors in judgment, from ignorance or carelessness, and are unintentional. In other situations, greed may prevail over abiding by the standards of care and a hospice may choose to "cut corners," in certain situations (where they think they can get away with it) with devastating results to a patient or family here and there.

We don't believe that even the "rogue" hospices are "bad" all the time ... they may provide excellent hospice care to one patient and then provide either poor care to another patient in a particular type of situation or deny care altogether (in order to save or make money). The health care industry is in constant flux, always changing and evolving. While there is constant pressure to cut costs and services, the standards of care require decent, quality hospice care to be provided.

There is no one answer to the problems of health care or hospice care, but eliminating health care fraud would help...increasing funding for health care would help. Eliminating the "for-profit motive" out of health care decision-making would help. That is not to say that health care industries cannot make money; they should. But when top executives are getting millions of dollars salary and benefits per year and patients are denied basic care, something terribly wrong is happening.

Health care is a "calling" for the professionals that serve from their heart, in the field. Yet for some administrators in many agencies, it is solely a business that they happen to be working in. The charitable, non-profit motivation which started almost all great facilities in our nation needs to be strengthened in health care.

Large health care corporations complain about the cost of providing service, yet many make millions of dollars in profit, or pay administrators millions in salary and benefits. Pharmaceutical and durable medical equipment companies are extremely profitable. What happened to the heart of health care? What happened to the idea that we serve each other out of love, dedication, and the mission of health care? We hope that more of us will be motivated to start non-profit, charitable health care agencies, facilities and institutions where the public can be truly well-served!

We hope that you will find an answer that applies to your hospice emergency situation. If you don't find your answer here, check the main list of topics on our homepage and read the topic that seems to apply to your situation.





Question:     My brother entered hospice after several months of battling lung cancer. He also has emphysema and suffered a stroke. When he entered hospice we had the understanding that occupational and physical therapy would be provided in an effort to keep him comfortable with the goal of trying to make him stronger.

Today, the occupational therapist came out and said that therapy is not generally permitted for hospice patients because Medicare frowns on providing therapy for what may very well be terminally ill patients.

This doesn't seem right. My brother has been feeling stronger day by day and wants to work at regaining some strength for as long as he's here with us. Is what the therapist said true? Can they simply deny my brother the therapy he wants and needs? Any help you can provide with this would be greatly appreciated.


Answer:    

In hospice, everything done for your brother really is aimed at improving the quality of life he has while he is with you. Managing symptoms is part of hospice, but therapy is also a part of hospice if there is a possible gain to be made. If your brother had a stroke, how much mental function and physical ability does he still have? Certainly, you are correct that hospice must provide occupational therapy if it will increase the quality of life for your brother, even though he is terminal.

It is simply untrue to say that Medicare discourages hospices from providing therapy to hospice patients. In fact, the regulations require hospice to provide therapy if it meets the need of the patient and will improve the patient's quality of life! The regulation about hospice and therapy can be found posted on our website (and is part of the Code of Federal Regulations) at: 42 CFR ch. iv. section 418.92. Just find the section 418.92 which states:

  • Sec. 418.92 Condition of participation--Physical therapy, occupational therapy, and speech-language pathology.

  • (a) Physical therapy services, occupational therapy services, and speech-language pathology services must be available, and when provided, offered in a manner consistent with accepted standards of practice.

Hospices are paid on a "per-diem" basis and get a lump sum of money per day. They are then required to provide whatever the patient reasonably needs to maintain or achieve comfort and help improve the quality of life as much as is realistically possible. Hospices can make more money (even nonprofits) by skimping on services. I don't know the exact condition of your brother, but if his physician determines that he would actually benefit from therapy, then the hospice must provide that service.

On the other hand, if your brother is truly weak and getting close to passing on, then doing the therapy could actually be almost "torture" for your brother. It really depends on his situation. Building up strength in the terminally ill is not always possible. If your brother were in remission, then that would be a worthy goal, but if he is at a late stage of the terminal illness, his metabolism may not be able to build up tissue/muscles etc. by absorbing the nutrients, processing them and creating new cells/tissue etc.

There is something called an "anabolic" state of metabolism and something else called a "catabolic" state of metabolism. If your brother is in serious metabolic decline, his metabolism would be catabolic and breaking down tissue, basically "falling apart" so to speak, or in other words: his organ systems may be failing.

The type of metabolism can be detected when the physician evaluates lab results, kidney function, etc. The anabolic state is the healthy state where our bodies are building up tissue and we are actively creating new tissues/cells, etc. All terminally ill will eventually end up in the catabolic state if they don't die of a sudden heart attack or pulmonary embolism or something like that.

So, to sum up, if in the physician's view, your brother has potential to benefit from the therapy, and your physician orders it, the hospice must provide that therapy. It would be helpful to speak with the physician and get an understanding of what your brother may accomplish in therapy. Then speak with the hospice RN case manager and work together to form a realistic plan that allows your brother to do therapy which he can tolerate and benefit from.






Question:     In the past weeks, the hospice folks have been rather surprised at how well my brother has been doing. They claim that he has more air moving through his lungs, his appetite and color are excellent and he appears to be responding very well to occupational and physical therapy. They are talking about taking him off hospice and putting him into their home health care service. However, we are getting conflicting answers when we try to get an idea of the difference between the two. One person tells us he will get more therapy, another says less. I do know that we would need to pay for his supplies (diapers, etc.) if he's not in hospice, but everything else is unclear.

Answer:    

It is a good idea to trust your instincts! In hospice, all nursing services, therapies, medications and other supplies must be provided by the hospice. If your brother gets off hospice, then he would again be eligible under the general Medicare benefit, but that doesn't pay for medications or supplies at all. The general Medicare benefit reimburses the home health agency for nursing visits and home health aide visits, but there is no provision for other levels of care such as hospice "continuous nursing care."

In fact, in hospice, continuous care is provided as part of the benefit, while in home health care, if your brother needed 24 hour care, your brother and the family would have to pay for the private duty home health care services (and the home health care agency would make more money). It does not appear that they are keeping your brother's best interests in mind. If your brother is still enrolled in the hospice, then the hospice must provide therapies and all other services that he, as a terminally ill patient can benefit from.

Although your brother and your family must make your own decisions, I would advise caution in terms of switching out of hospice, since home care on the Medicare visit side is really cutting back on the services they provide. And they may not guarantee what you'll get if you switch! They might only say, "it depends on your brother's condition" and that would be true, because, the regulations for regular Medicare home care visits states that all services must be "necessary and reasonable." That is the standard requirement throughout Medicare.

When I worked in home health care before the reduction in the reimbursement rate, the managers told us to "increase the number of visits you make" (they got paid more if more visits were made back then). As soon as the reimbursement rates for home health care was reduced (and it went into effect), the managers immediately told us to "cut back on visits and make only the necessary visits to the patients." With the new reimbursement rates, home health agencies have "caps" on the amount they get reimbursed for any one patient each year.

What the home care agencies state is "necessary and reasonable" has drastically reduced since the federal government cut way back on the funding. It seems highly unlikely that the same population of patients suddenly no longer needs nursing visits when the reimbursement rate went down, but needed more frequent nursing visits when the reimbursement rates were better. Recent research shows that home care agencies are visiting their patients much less since the reimbursement amount has decreased.

Another consideration is how much are your brother's medications? How much are the other supplies? Where is he living, in a facility or at home? All of these things need to be taken into consideration. One thing to remember, you can switch back to hospice if you switch off from it. You can ask the hospice about that, but the law states:

  • Sec. 418.28 Revoking the election of hospice care.

  • (a) An individual or representative may revoke the individual's election of hospice care at any time during an election period. (b) To revoke the election of hospice care, the individual or representative must file a statement with the hospice that includes the following information: (1) A signed statement that the individual or representative revokes the individual's election for Medicare coverage of hospice care for the remainder of that election period. (2) The date that the revocation is to be effective. (An individual or representative may not designate an effective date earlier than the date that the revocation is made). (c) An individual, upon revocation of the election of Medicare coverage of hospice care for a particular election period-- (1) Is no longer covered under Medicare for hospice care; (2) Resumes Medicare coverage of the benefits waived under Sec. 418.24(e)(2); and (3) May at any time elect to receive hospice coverage for any other hospice election periods that he or she is eligible to receive.

Your brother has the right to either stay in hospice or choose to revoke the hospice benefit. However, if he does go back to the regular Medicare benefit, he may lose many benefits which are part of the hospice benefit. The hospice benefit is really a wonderful benefit for those who do have a terminal illness. Revoking the hospice benefit when one has a terminal illness may end up costing the family and your brother a lot more money (and save the home health/hospice money).




Question:     I can't find the regulations that establish the standards of care for Hospice...where can I find them?

Answer:    

You can find the regulations on hospice in the Code of Federal Regulations 42 CFR ch. iv. Section 418. These laws can be seen at this website at: www.hospicepatients.org/law.html








Question:     My friend is dying with cancer and has severe pain. He has no money to pay for the medications. What should we do?


Answer:    

Hospice provides all the medications related to managing the symptoms of the terminal illness. There can be a 5 percent co-pay up to a maximum of $5.- so getting admitted to hospice care would be the best way to make sure your friend's pain is controlled with medications.




Question:     My Dad is in a nursing home and has signed up for hospice as well, but nobody comes when he puts on the call-light. The nursing home says the hospice should take care of my Dad, and the hospice says the nursing home is responsible, what should I do?

Answer:    

When a patient is in a nursing home and also enrolled in the hospice, the hospice has the legal obligation to make sure the patients needs are being met, especially with regard to managing his symptoms which are caused by the terminal illness. The hospice must also make sure that the care being given is adequate. How does the hospice do this? The hospice must set up a "hospice care plan" that meets the needs of the patient and must make sure that the nursing home staff provide care according to the plan.

In situations where the patient is in a crisis with severe symptoms out of control (like uncontrolled pain, seizures, vomiting, agitation and other symptoms) then the hospice actually must provide hospice staff/licensed nurses and aides around the clock until the crisis is controlled. This applies even when the hospice patient is living in a nursing home. See the topics on the Four Levels of Hospice Care.

Please don't let the nursing home or hospice give you the run around in any way. In any case, the law requires that your father's needs for care be met on all levels, just as if he were at home in his own home. The nursing home is considered to be his "home" for hospice purposes and must provide the day to day routine bedside care when the hospice staff are not there to do so.




Question:     But the nursing home still doesn't come when my Dad puts the call light on and they won't provide disposable diapers. Sometimes it takes them 20 minutes or more to come to the room. They are really short-staffed! What should I do? And I'm really worried about when he gets worse! If it's bad now, what will happen when my Dad has severe pain, even worse than he has now?

Answer:    

It can be confusing, but the main thing to keep clear is that for the purposes of the hospice regulations, your Dad is in his "home" (which can be his actual own home, a foster care home, nursing home or other facility). The hospice is not responsible for providing the daily bathing day in and day out (unless they're already there), and if the nursing home refuses to provide the daily care you will need to be ready to meet with the director of nursing at the nursing home. If you don't get prompt improvement, then it may be necessary to place a complaint to the State licensing and certification division which inspects the nursing home. You can find addresses for your State's licensing and certification division from our home page. Do not hesitate to place a complaint if you do not get prompt action, because your Dad only has so much time here (however much that is) and he needs proper care NOW.

The regulations do not require the nursing home to provide disposable incontinent pads/diapers. They only have to provide something. If you choose not to take what they offer, then it is your responsibility to purchase what you desire, unless (read your contract which you or your Dad signed upon admission to the nursing home) the contract with the nursing home specifically states that they would provide the type of incontinent pad desired by your Dad. You will have to read the fine print, unfortunately, and see what it says about that.

If the facility is short staffed as you say, then you need to make it clear that you will not tolerate a lack of proper services for your Dad, and if your Dad does not get his needs met in a timely basis (keep a running written log of all nurse and nurse aide visits to your Dad, day by day, every day and what they did), then put that in a complaint to the State and give a copy to the director of nursing. You'd be very surprised to see how quickly things will improve!!

Unfortunately, in health care as in business elsewhere, "the squeaky wheel gets the grease." You have to do a little "squeaking" to get some attention, and let them know in very clear terms that you will complain to the state if they do not follow the regulations governing nursing homes for staffing and care of your Dad. There are forms on our website for filing complaints with the state. If the nursing home is The Joint Commission accredited, then a complaint to The Joint Commission can also be made.

You may think that you can just "talk" to the director and it will be corrected, but if it is corrected promptly only by talking, then you'd be very lucky and one of the few. In many cases, patients and families talk to the director and get a run around, time goes by, and the patient dies without anything being truly corrected. So, please "hear me" if you care for your Dad and are serious about getting real change in his care. Health care is a business for the administrators and stockholders...nothing more, nothing less. The public relations firms talk eloquently about how much they "care" about the patients, but actions speak louder than words. If they cared so much, they wouldn't be understaffing. They know they're understaffing...they save money that way and put the money into their pockets and the pockets of their stockholders.

Hospice will and is required to get more involved if your Dad's condition/terminal illness worsens/intensifies. Again, the hospice is required to make sure that your Dad is kept comfortable, that his nursing and medical needs are met and that any needs for the family for counseling are also met. Only if your Dad develops a crisis situation where a symptom is out of control such as uncontrolled pain, vomiting, seizures, bleeding, active phase of dying with uncontrolled symptoms, etc., would the hospice be required to be there around the clock. Yes, even though your Dad is in a nursing home, the hospice is REQUIRED to provide 24 hour HOSPICE nurses if there is a crisis with severe uncontrolled symptoms, even in the nursing home! See our page on Continuous Care Level of hospice care.

24 hour nursing care by the hospice is called "Continuous Care." 50% of the time when Continuous Care is provided, a licensed nurse must be there. This means that an LPN or RN must actually be providing the continuous care for 50% of the time CC is provided. If 8 hours of CC, then 4 hours have to be provided by a licensed nurse. If 24 hours of CC, then 12 hours have to be provided by a licensed nurse. In addition, an RN must visit your Dad at least once every day when CC is provided, in order to assess his situation and make sure his needs are being met.

Only hospice nurses are specially trained to handle these types of crises in terminal illnesses (although you may find some nursing home nurses who are knowledgeable as well), and in addition, the nursing home nurses are so busy, they cannot possibly be in your Dad's room enough to properly monitor him if he's in a real crisis situation. Many nursing home nurses are reluctant to actually administer the medications that physicians order for the terminally ill patients for pain or other symptoms, because the orders are different from what they're used to giving out. Some think the dosages are too high, not realizing that for the pain to be controlled, in some cases, sometimes the dosage has to be very high. That's why it's so important for you and your sister to be there as much as possible, and protect him, advocate for him and his needs and get him the care he needs and which the law requires be provided for him.

Also, remember, the nursing home is taking your money for the care it is supposed to provide. If it doesn't provide the care, that is fraud! The hospice is taking money from Medicare or the insurance company for services, and it is required to provide whatever services are needed to make sure your Dad's symptoms are controlled (to the best ability of medical science) and that he gets the care he needs. They have to work with the nursing home to get that done. Today in health care you need to be "assertive," and that's just the way it is, unfortunately. Please let us know if there are any further problems or questions.




Question:     The nursing home situation isn't working out. We talked to the nursing home director and still nothing's changed. Can we move my Dad out to another hospice facility and change hospices?

Answer:    

Yes, although almost every hospice would tell you that you shouldn't move your Dad and they don't recommend switching, you always have the right to change hospices at least once within a hospice "certification period." You are in charge.

Remember, hospices are businesses that receive their money from having patients enrolled in their program. If your Dad leaves their program, they lose money. You need to decide what is best for your Dad, not what is best for the hospice's financial cash flow. If the hospice wants to retain your Dad as a "client" using their services, then they need to provide high quality hospice services, just like any other business. The thousands of hospices in our nation are separate businesses, whether they are non-profit corporations or for-profit corporations.

There is no such thing as "Hospice" that includes all the hospices in our nation. Even though the hospices will raise money and say, "all your money goes to "hospice" . . . the truth is that all the money will go to their business, which just happens to be a hospice (Let's have a "reality check" please!)

The hospice has no right to advise you that you can't change hospices. If you really believe that services are not going to improve promptly and your Dad is expected to live more than a few days more, you may wish to change to another hospice or other facility where he'll get better care. Hospice is about providing comfort care, and the nursing home is supposed to provide basic skilled nursing care, plus bedside care whenever your Dad needs it. If your Dad is not getting his needs met, what is the nursing home or hospice doing? There are better hospices and better nursing homes. We can't tell you which decision to make, but if you want your Dad to be really well cared for, and the hospice or nursing home is not doing their job, you always have the right to move him to another facility.




Question:     My mother developed cancer five years ago. She underwent many rounds of chemotherapy, and has been considered terminal for more than a year. Recently she has refused to take the morphine and forces herself to get up and walk around. Now the RN case manager has suggested that my Mom be terminated from hospice care. We are VERY upset! We don't know what to do. The hospice nurses and home health aides have been a great help to Mom. Can they terminate my Mom from hospice care against her will as the RN suggested?

Answer:    

I can only imagine the deep distress this shocking announcement made upon you and your family. On the one hand, your Mom has lived longer than perhaps they estimated, but the regulations do NOT say that a terminally ill person has to die within the six month period from the beginning of being certifed as having a "terminal" illness. The regulations say that the doctor must certify that the patient MAY die within six months if the disease process runs its normal course. This is a statistical probability given a certain diagnosis, not a prediction of what actually has to happen. There are thousands of hospice patients who have lived longer than six months, and there are many who live much less than six months.

Hospice cannot discharge your mother just because she hasn't died from the terminal illness. It is up to your Mom's attending physician to re-certify her when the "certification period" is over. Every time a certification period ends, the attending physician recertifies a patient that still has a terminal illness. Of course, if there were a misdiagnosis and she does not have a terminal illness then that is a different story. If she is truly "cured" then hospice services would be ended, because your Mom wouldn't need them. But in your situation, your Mom still has the terminal illness according to her physician. Therefore, she is still eligible for hospice.

You need to speak directly with the RN case manager and tell her that your Mom has chosen to keep the hospice benefit services, and she does NOT want the services ended. We can't emphasize enough that you need to advocate for your loved one. You need to speak up and let them know what your Mom's wishes are. Hospices cannot make these decisions for you! If your Mom doesn't need frequent visits, the hospice can adjust the schedule so the nurses visit less frequently, and then increase them when she needs more help. IF the RN case manager does not agree with you, you will need to speak with the hospice's director of nursing services.




Question:     My family needs your help. My brother has lung cancer that has spread and is now said to be bone cancer. The bone cancer is in his spine, ribs and hips. We want him to be able to be home and be comfortable. All the doctors do is keep him in the hospital and give him enormous amounts of Demerol. This is no way for a man to live. He's very confused and sometimes hallucinates, because he's all doped up. We don't know what else we can do. We've tried chemotherapy and radiation. Please help us find an alternative way for this man to finish his life with a little dignity. Please send us any information you can.

Answer:    

It is not usual for a cancer patient to be kept in a hospital longterm for pain control. Hospices can provide the care which on seeking to help your loved one be as comfortable as realistically possible under the circumstances. It appears that the physicians involved may not be experts in hospice care. Some doctors are not always well-trained in comfort measures for end of life care, although many are. Even though they are the experts in trying to treat the disease and cure it, care directed toward curing is not the same as medical care directed toward what is called "comfort measures" or "palliative care." Hospice care or palliative care is a specialty in the medical field.

Demerol is notorious for having serious side-effects such as hallucinations or delusions, and other adverse effects. It may be used short-term in the hospital under some circumstances, but most experts in palliative care or hospice care do not commonly use it for longterm treatment for the pain from cancer, although each physician has their own medication of choice.

Narcotics (opioids) ARE commonly used to treat serious pain in terminal illness, and there should be no stigma or blame for the patient who requires strong narcotics to ease their pain. There is no danger of addiction, because the patient is dying anyway, and so, using narcotics to relieve pain in this circumstance is the compassionate, loving thing to do to help them have a better quality of life, than the sometimes excruciating and severe pain of some cancers.

You mention that your brother has lung cancer which has also spread and become bone cancer as well. Many physicians order medications to "dry up" the excessive secretions which create congestion in the lungs and can cause the lungs to fill up with fluid. Medications such as scopolamine, atropine or hyoscyamine may be given to help the patient breathe better, and these medications are given right up to the very end, otherwise the lung congestion worsens and makes the patient even more uncomfortable. Your brother could benefit greatly from finding a physician who is skilled at pain management and hospice care.

Pain caused by cancer in the spine and bones can be quite painful (understatement) and is not always easy to relieve. Your brother may need a medical expert in pain management who has hospice experience or is very well informed about treating such pain. If you contact one of the larger hospitals in your area, you may ask to find out where the nearest "Pain Clinic" is for a consultation with some of the physicians there, or you could contact a hospice in your area (look in the yellow pages for a listing under "hospice.") and ask them if they can recommend a physician who is very good at handling pain in the terminally ill.

Bone cancer pain is not something that just "any" doctor can effectively treat, please understand. There are different medications which physicians order to be given, and different treatments. Sometimes Intravenous (IV) morphine (a morphine "drip" may be given or other opioid medications (narcotics), and also, ibuprofen (Motrin) or other pain medications may also be given. The evaluation of your brother's situation must be conducted by a physician who is experienced in pain control.

It is sometimes surprising that a knowledgeable physician may order a seemingly less strong medications like Motrin (in strong doses) along with the narcotics given to ease the pain, and get relief from pain for the patient, even though a strong dose of narcotics alone may not be able to alleviate the pain all by itself. In some cases, surgery is done to stop the pain, and sometimes radiation treatment may be performed. There are so many different ways of dealing with pain that truly, you need to get expert medical advice from a qualified physician.

Your concern about your loved one being all "doped up" is understandable. However, when there is extreme pain, patients do not always get "doped up" when receiving narcotics. It may be that the choice of Demerol may be the problem and perhaps another medication would be more appropriate. It is important for you and the patient to communicate your wishes for pain relief to be given, yet you also need to communicate that you don't want your loved one to be confused.

It should be understood that in some cases, it is not always possible to have both pain relief and full alertness right up to the end. Some patients only obtain relief from pain with massive doses of narcotics and sedatives and they die peacefully in their sleep.

Some patients choose to refuse to take any pain medications due to a "prejudice" against narcotics and don't want anything to do with them, but they suffer tremendously from the severe pain. You can know that the pain is severe, even though the patient tries to hide that from you sometimes, by observing the patient to see if his body is relaxed, his jaw and face relaxed and how he holds himself when moved in bed or moving around the room walking. Any rigidity and tightness may be likely signs of severe pain. In this type of case, it is important to work with the patient, honor his wishes, yet also make sure he or she is fully informed of what can be done to relieve that pain, so he can make an informed choice. We can't always get total relief from pain while at the same time remaining fully alert, but it is a worthy goal which can sometimes be achieved.

So, it appears that you may wish to call a local hospice or pain clinic in your area. From there, you can ask questions of the physicians and nurses about your loved one's needs and what services might be provided. Keeping him at home is another question.

If you and your family have the manpower to be there for him around the clock and are able to help care for him, then you may be able to keep him at home till the end. Or, if you have the finances to hire private duty nurses at times, then it could be done. Hospice will only provide 24 hour around the clock "continuous nursing care" if the patient is in uncontrolled pain or a crisis of another sort, and once the crisis is resolved, then the 24 hour care is discontinued. If your brother's pain is severe and uncontrolled, a good hospice will provide 24 hour care until the pain crisis is managed and your brother is more comfortable.




Question:     My mother has just been enrolled in hospice due to her emphysema and kidney disease. She has severe reactions to morphine and becomes very lethargic, sleepy and confused, and her blood pressure drops. Doctors in the past have warned her never to take it again. Mom told the hospice she does not want morphine, but the hospice doctor has prescribed morphine anyway. We are afraid that this can hasten our mother's death. What can we do?

Answer:    

In every aspect of health care, the patient always has the right to accept or decline any form of treatment, medication or care offered. In the situation as you describe it, your mother has the right to refuse to take morphine and if she clearly refuses it, the hospice cannot force her to take the morphine. In some cases, physicians use morphine for difficulties with breathing that is labored and when there is severe respiratory congestion.

You need to first speak with the hospice physician and the hospice RN case manager to get a clear understanding of their explanation for the morphine and why they feel the medication is appropriate. If however, you are still not convinced, and your mother still does not wish to take any morphine, your mother can put that refusal in writing (keep a copy for your records), give a copy to the physician and hospice, and tell them that she will not take any morphine. If the physician or nurse still refuses to listen and imposes the medication, then you may wish inform them that you will seek legal counsel.

If the hospice doctor or nurse forces your mother to take the morphine (by pill, IV, injection or other form) against her will, you may wish to change physicians, hospices and seek a competent attorney who is not from the area where the hospice and doctor work (political connections can cloud the situation and you need objective, honest advice). You may even need to consult the county district attorney or the state Attorney General's office. Imposing a medication on a patient against his or her will is not an accepted practice, whether medically or legally. There are doctors and nurses who have been prosecuted for murder, manslaughter and other varieties of criminal offenses for imposing narcotics on a patient against their will or in flagrant disregard of the standards of practice.










Question:     Our elderly aunt's physician has prescribed morphine and encouraged her to enroll in hospice. They now are teaching my father and sister to give the morphine to her. Can family members give a narcotic? Is what they are doing right?"

Answer:    

The physician has the authority to prescribe the medication and to approve of a family member giving the medication. The RN case manager is responsible to teach the family members how to give the medications, what adverse effects to watch for and when to call the RN for further help. Giving narcotics is commonly done by family members, even in hospice. Hospice provides many services, but the family is still one of the most important parts of the hospice team which provides care to the patient. If you feel that your father or sister are not qualified or have not received enough information about how to give the morphine, then you need to speak with the RN case manager and ask for further instruction and supervision.






Question:     A home health aide writes that "in the hospice I work in, the nurses determine who's able to get into hospice based on if the patient is going to die real soon or not. If they believe the patient will die very soon, they put them on home health and NOT on hospice. It doesn't make any sense to me, because hospice is for the dying, not home health! I don't know anything about the law, but I don't feel good about this. I can't talk to the hospice manager, because I'm afraid they'll fire me and without my job, I won't be able to help support my family. Is what they are doing right?"

Answer:     The federal law does not give the authority to an agency to decide whether or not to put a patient into hospice or their home health service.

It is the patient's attending physician who "certifies" the patient as having the terminal illness, and therefore eligible for the hospice benefit. In home health care, the agency can bill Medicare (or other insurers) for the nursing visits and services provided.

In hospice, the agency gets a set fee for each day the patient is admitted to the hospice. The reimbursement goes way up if the patient is getting around the clock "continuous nursing care" level of care, but many hospices fudge on providing the continuous care level of care and families are left ragged wondering why they ever used hospice or what the hospice is for in the first place if they're not there when the patient and families need them!

Obviously, when the patient is very close to dying, within a few days, many symptoms would be more intense and require more intensive nursing care and other services. The home health/hospice administrators may be thinking that if they allowed the dying patient into the hospice at the end, they'd be losing money or don't have the staff needed to cover all the needs, but if they put the patient into home health, they can get more money for the services they provide.

So what does the agency's business decisions (about where to place the patient) have to do with the patient's legal health care rights? Nothing. All patients that are certified as terminally ill by their physician (due to actually having a terminal illness) are eligible for hospice services and all levels of care within the hospice benefit. It is a violation of the standards for an agency to deny a patient hospice care, just because he is going to die soon. That is the opposite of what hospice is supposed to be about!

If you want to help the patients to get hospice care when they need it, you may wish to consider sending a complaint to the State licensing division, but if you do so, your identity may be found out. You could send it anonymously without your name on it, but the hospice may still "figure it out" if you have voiced your opposition to this policy. If you truly wish to remain anonymous, don't say a word to the hospice and keep quiet while your anonymous complaint goes in to the State. The hospice administrators know that they are violating the standards, don't think for a minute that they are unaware of the regulations.

You will have to look within yourself and see whether this is important enough to you to risk retaliation by the hospice (if they find out). Retaliation is not legal, but it is done throughout the health care as well as other industries. If you do decide to protest this wrong policy of the hospice, you may wish to look for another job, realistically! More information about these types of difficult situations for health care professionals can be found at our website: "A word to health care professionals" and at "Protecting yourself, your license & family, financial & job security when dealing with fraud at your employer." You should know that not all hospices are like this. We receive letters from others like you who question the illegal policies of their hospices. Often they say that they left hospice for a while, but because their heart was dedicated to hospice, they went to another hospice or started a new hospice on their own. Look around at the other hospices in the area; you may wish to switch to another hospice where quality hospice care IS given. Best wishes and thanks for your caring heart!




Question:     My uncle was hospitalized and they found that he has terminal cancer. It's gone undetected for a long time and our long-time family physician recommended the local hospice in our area and told the nurse in the hospital that we are all agreed that my uncle should go to the local hospice. I came back the next day and found another hospice transferring him out of the hospital to their hospice which is not at all where the doctor and we want hime to be. Can they just walk in and take my uncle to their hospice against our wishes and the doctor's recommendation?

Answer:    

This type of problem has been occurring in some areas where there is fierce competition among separate hospice agencies for patients. As unbelievable as it seems, some of the larger hospices which are trying to "take over" a territory and become the only hospice in the area are actually "stealing" terminally ill patients from their hospital beds. They have a social worker or nurse who is friendly to the big hospice tipping them off that a new terminally ill patient has been admitted to the hospital. Then before the local smaller hospice can get there, they sign the patient up for their hospice...and quickly transfer the patient out to the larger hospice.

The family is confused and thinks, "it must be right, because the doctor said he'd take care of everything." So, they sign the papers, never suspecting that an illegal transfer of the patient has occurred, against doctor's orders and against their own best wishes. They find out later, but then often decide that they don't wish to go through the hospice admission process (which can be a lengthy interview and assessment) over again to transfer their loved one to the correct hospice agency. They don't know how to even begin to address the problem and most people never find out about the "switch"

To answer your question: No, they can't legally do it, but some unethical hospices which are extremely competitive will do almost "anything" to increase their cash flow (by getting more patients). You can complain to the State licensing board about such illegal transfers of your loved one, and also make a complaint to the hospital where your uncle had been hospitalized. Make sure the hospital's Board of Directors and the hospice that your doctor had originally recommended knows about what happened. You might even want to send a letter to the editor of your local newspaper, so that it doesn't happen again! Best wishes!





Question:     I took care of a dying relative recently and a hospice was involved in his care. They told me they did not provide 24 hour nursing care. They told me that I would have to call an Agency and pay for care or I could call one of the people on their list and hire them privately and pay them. Is this right? It doesn't seem fair!

Answer:    

When a hospice patient has severe symptoms which are out of control and cannot be managed by the "routine home care level of hospice care", then the hospice must provide continuous care around the clock as needed by the patient to manage the symptoms and get things under control. Uncontrolled symptoms from a terminal illness are considered a hospice emergency or crisis for the patient. The attending physician must order that level of care (or any care) in hospice. Even "standing orders" used by the hospice RN case manager must be approved of beforehand by your loved one's attending physician. The hospice is required to contact the physician if the patient's symptoms are out of control and require more intensive nursing and medical care to regain control.

Some hospices simply don't inform the doctor that there's a problem. So call the attending physician immediately yourself if the hospice is refusing to provide the care your loved one needs. You always have the right to call the attending physician yourself if the hospice is not doing their job. A good hospice would have taken care of this by making sure your loved ones have the nursing care needed. It is a violation of the standards of care when the hospice does not provide that continuous care when the criteria for continuous care are met ... i.e., when the patient is suffering severe symptoms out of control. This is not something that can wait for days of "meetings" with hospice staff, for your loved one's sake, it needs to be taken care of right away.

The only exception to the rule (about providing Continuous nursing care level of care) that we know of is if the hospice is very small (less than seven employees), out in a rural area, and/or not licensed. If the hospice is taking Medicare, Medicaid or private insurance reimbursement, it must be licensed. And if it's licensed, then the hospice has to follow the regulations. They cannot refuse to provide the care your loved one needs. In fact, the regulations state that the hospice must either provide the care themselves or they themselves must go out and subcontract that care through another agency, and train those nurses from the other agency to provide appropriate hospice care, according to the hospice plan of care for your loved one. You can see the law about hospice at our website at: the federal law on hospice.

For the hospice to force you to pay privately out of pocket for that care is not right. You can require the hospice to provide the care, and tell them that the regulations require them to provide that care. If the RN case manager refuses to get continuous care for your loved one, have the physician send a written order for the continuous care to the hospice, (and you get a copy as well). If you don't get immediate action (and we mean "immediate") then speak to the hospice director.

If the hospice director doesn't immediately order the care to be provided, you can "demand" to speak with the hospice medical director. The medical director of the hospice is the person who can intervene if the hospice RN and director don't help you. The hospice medical director is required by a separate specific law, to intervene on your loved one's behalf and make sure your loved one gets the care needed to manage his or her symptoms!

If the hospice medical director refuses to act immediately to order continuous care (yes, the hospice medical director can also order the hospice to provide certain care and medications under his or her own medical license), then you can file a written complaint with the State licensing division. You can find the address for your State licensing division at our website. There is a complaint form there as well. Information about filing a complaint is found at Complaint Information. Send in your complaint to the state. You can find the address for your State's licensing division at: State Addresses for filing complaints.

You can give or fax the hospice a copy. If they still refuse, then you can switch hospices as soon as possible. You always have a right to switch hospices once within one hospice certification period. You may tell them that you have filed a complaint and that you are going to switch hospices. There are better hospices out there that are ethical and do provide continuous care when needed!




Question:     My sister had a heart attack and now that she's older, has severe congestive heart failure. The doctors don't give her much time to live. Could you send me some information about your program in our area? I would appreciate any information. Thank you.

Answer:    

We are sorry to hear about your sister's condition. We are not a hospice agency or direct provider of hospice care, and we do not suggest or encourage the use of any one particular hospice agency over another. The best way to find a hospice agency in your area is to look in the local yellow pages directory or get a reference from someone locally you know who had a good experience with a hospice. We provide a list of resources for looking up a hospice at our web page Find a hospice. We wish you the best and if you have any questions about the care or services your sister needs, please don't hesitate to contact us.




Question:     I'm confused about the term "Hospice." My brother sent a memorial donation to "hospice," but the hospice that cared for our Dad says they never got the money. My brother says he's sure he sent it to "hospice" and he even has a cancelled check to prove it. What's going on?

Answer:    

The term, "Hospice" as a generic term, is widely used by the more than 3,000 separate hospice agencies in the U.S. When they raise money or speak about their program, they say, "the money you donate will go to "Hospice," or "Hospice is here for your loved ones." However, there is no such thing as one "hospice" that encompasses all of the U.S.

There are thousands of separate businesses called "hospices" or "hospice agencies," and each has its own separate administration, board of directors and legal setup as a non-profit or for-profit corporation. We believe that when the hospices themselves refer to "hospice" it would be better for them to specify their own specific hospice's name, because it is confusing to the public.

In addition, we have heard complaints from hospice directors who find that donations to their hospice are taken by other hospices when the public accidentally sends a donation to the wrong hospice, thinking that one hospice agency is the other hospice which provided care to their loved one. And the hospice that gets the money by mistake (and knows it is a mistake because the donation is sent "in memory of" a patient they never served) often keeps the money anyway! ... what the public doesn't know about what goes on behind closed doors in the hospice industry!






We at the Hospice Patients Alliance are saddened when we hear of the unnecessary and troubling problems that terminally ill patients and their families are experiencing. The questions and answers above are modified to protect the privacy of the families involved, but are taken from real situations which actually confronted families trying to access quality hospice care. These situations are shared here so that others may benefit from seeing what others have been going through and looking at the answers provided.




NOTE: These answers are not to be considered medical or legal advice. If you are seeking legal or medical advice, you must contact your own physician or an attorney. We suggest in that case that you print out a copy of any relevant parts of the hospice regulations from the Code of Federal Regulations available at our site at: www.hospicepatients.org/law.html or simply tell the attorney that the regulations are found at: "42 CFR ch. iv. part 418" and they will be able to get the law from their reference books.



This website will always be in the process of construction, with updates and additions. If you wish to suggest an emergency question for this hospice information center, please let us know about them.



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