Tips for Using Hospice and Death with Dignity

(The Following Information may or may not express the views of the Web Site Manager, the info was randomly selected and put here for informative purposes only, not to make accusations. Feel free to search the internet on your own and you will find similar information that is provided below. There are good stories out there and horror stories. Having been a volunteer, I have experienced both.)

Basic Benefit Requirements For Medicaid

Under Federal guidelines, the hospice benefit is available to individuals who have been certified by a physician to be terminally ill. An individual is considered to be terminally ill if he/she has a medical prognosis that his or her life expectancy is 6 months or less. Individuals who meet these requirements can elect the Medicaid hospice benefit if provided by the State. In order to receive payment under Medicaid, a hospice must meet the Medicare conditions of participation applicable to hospices and have a valid provider agreement. The provision of care is generally in the home to avoid an institutional setting and to improve the individual's quality of life until he or she dies. However, individuals eligible for Medicaid may reside in a nursing facility (NF) and receive hospice care in that setting. What is Covered

In order to be covered, a plan of care must be established before services are provided. The following are covered hospice services: nursing care; medical social services; physicians' services; counseling services; home health aide; medical appliances and supplies, including drugs and biologicals; and physical and occupational therapy. In general, the services must be related to the palliation or management of the patient's terminal illness, symptom control, or to enable the individual to maintain activities of daily living and basic functional skills.

Additionally, there are other services that may be provided under the hospice benefit, subject to special coverage requirements. Continuous home care may be provided in a period of crisis. This consists of primarily nursing care to achieve palliation or management of acute medical symptoms. A minimum of 8 hours of care must be provided during a 24-hour day.

Also, short-term, inpatient care is covered, as long as it is provided in a participating hospice unit or a participating hospital, or NF that additionally meets hospice standards. Services provided in an inpatient setting must conform to the written plan of care. General inpatient care may be required for procedures necessary for pain control or acute or chronic symptom management, which cannot be provided in other settings. Respite care is short-term, inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual at home. It may only be provided on an occasional basis and may not be reimbursed for more than 5 days at a time. Respite care may not be provided when the hospice patient is a nursing home resident. Dual Eligibles

The Omnibus Budget Reconciliation Act of 1990 (OBRA 90) modified the Medicaid statute relating to hospice services. Prior to OBRA 90, when a Medicaid eligible individual elected the Medicaid hospice benefit, he or she waived the right to Medicaid payment for services other than those described earlier. As modified, the law would allow an individual to receive payment for Medicaid services related to the treatment of the terminal condition and other medical services that would be equivalent to or duplicative of hospice care, so long as the services would not be covered under the Medicare hospice program. This means that Medicaid can cover certain services which Medicare does not cover. Hospice Rates

Medicaid reimbursement for hospice care will be made at one of four predetermined rates for each day in which an individual is under the care of the hospice. The four rates are prospective rates; there are no retroactive adjustments, other than an optional application of a "cap" on overall payments and the limitation on payments for inpatient care, if applicable. The rate paid for any particular day would vary, depending on the level of care furnished to the individual. The four levels of care are classified as routine home care, continuous home care, inpatient respite care, or general inpatient care. Payment rates are adjusted for regional differences in wages. Reimbursement Limitations

Payments to a hospice for inpatient care must be limited according to the number of days of inpatient care furnished under Medicaid. During the 12-month period beginning November 1 of each year and ending October 31, the aggregate number of inpatient days (both for general inpatient care and inpatient respite care) may not exceed 20 percent of the aggregate total number of days of hospice care provided to all Medicaid recipients during that period. The State may exclude recipients with AIDS in making this calculation. Any excess reimbursement must be refunded by the hospice. Additionally, if a Medicaid hospice patient resides in a NF, the State must pay an amount equal to at least 95 percent of the NF rate to the hospice to pay for the room and board services provided by the NF. State:http://medicaid.aphsa.org/members.htm

Medicare Hospice Benefits

It is available as a benefit under Medicare Hospital Insurance (Part A). Medicare beneficiaries who choose hospice care receive non-curative medical and support services for their terminal illness.

To be eligible, they must be certified by a physician to be terminally ill with a life expectancy of six months or less. While they no longer receive treatment toward a cure, they require close medical and supportive care which a hospice can provide. Hospice care under Medicare includes both home care and inpatient care, when needed, and a variety of services not otherwise covered by Medicare. The focus is on care, not cure. Emphasis is on helping the person to make the most of each hour and each day of remaining life by providing comfort and relief from pain.What is hospice care?
Under Medicare, hospice is primarily a program of care delivered in a person’s home by a Medicare - approved hospice. Reasonable and necessary medical and support services for the management of a terminal illness are furnished under a plan-of-care established by the beneficiary’s attending physician and the hospice team. Medicare covers:

physicians’ services,

nursing care (intermittent with 24-hour on call),

medical appliances and supplies related to the terminal illness,

outpatient drugs for symptom management and pain relief,

short-term acute inpatient care, including respite care, home health aide and homemaker services,

physical therapy, occupational therapy and speech/language pathology services,

medical social services, and

counseling, including dietary and spiritual counseling.

Who is eligible?
Hospice care is available under Medicare only if:

The patient is eligible for Medicare Hospital Insurance (Part A);

The patient’s doctor and the hospice medical director certify that the patient is terminally ill with six months or less to live if the disease runs its expected course.

The patient signs a statement choosing hospice care instead of standard Medicare benefits for the terminal illness;

The patient receives care from a Medicare-approved hospice program.

Who can provide hospice care?
Hospice care can be provided by an agency or organization that is primarily engaged in furnishing services to terminally ill individuals and their families. To receive Medicare payment, the agency or organization must be approved by Medicare to provide hospice services.

Approval for hospice is required even if the agency or organization is already approved by Medicare to provide other kinds of health services. Patients can find out whether a hospice program is approved by Medicare by asking their physician or checking with the agency or organization offering the program. This information also is available from local Social Security offices.

Hospice uses a team approach that includes the patient and family, nurses, social workers, physicians, clergy and volunteers, all working together to plan and coordinate care. Family or friends (serving as primary caregivers) in the home can call for the help of a hospice team member 24 hours a day, 7 days a week. The team member will come to the patient’s home whenever needed and appropriate. The hospice team can arrange for a transfer to another setting when necessary. How long can hospice care continue?
Special benefit periods apply to hospice care. A Medicare beneficiary may elect to receive hospice care for two 90-day periods, followed by an unlimited number of 60-day periods. The benefits periods may be used consecutively or at intervals. Regardless of whether they are used one right after the other or at different times, the patient must be certified as terminally ill at the beginning of each period.

A patient who chooses hospice care may change hospice programs once each benefit period. A patient also has the right to cancel hospice care at any time and return to standard Medicare coverage, then later reelect the hospice benefit in the next benefit period. If a patient cancels during one of the first three benefit periods, any days left in that period are lost. How is payment made?
Medicare pays the hospice directly at specified rates depending on the type of care given each day. The patient is responsible only for:

Drugs or biologicals: The hospice can charge 5 percent of the reasonable cost, up to a maximum of $5, for each prescription for outpatient drugs or biologicals for pain relief and symptom management related to the terminal illness.

Inpatient Respite care: The hospice may periodically arrange for inpatient care for the patient to give temporary relief to the person who regularly provides care in the home. Respite care is limited each time to a stay of no more then 5 days. The charge (currently 5%), which is subject to change each year, varies slightly depending on the geographic area of the country.

Are other Medicare benefits available?
When Medicare beneficiaries choose hospice care, they give up the right to standard Medicare benefits only for treatment of the terminal illness. If the patient, who must have Part A in order to use the Medicare hospice benefit, also has Medicare Part B, he or she can use all appropriate Medicare Part A and Part B benefits for the treatment of health problems unrelated to the terminal illness. When standard benefits are used, the patient is responsible for Medicare’s deductible and coinsurance amounts. What is not covered?
All services required for treatment of the terminal illness must be provided by or through the hospice. When a Medicare beneficiary chooses hospice care, Medicare will not pay for:

Treatment for the terminal illness which is not for symptom management and pain control;

Care given by another healthcare provider that was not arranged for by the patient’s hospice; and

Care from another provider which duplicates care the hospice is required to provide.

To determine whether a Medicare-approved hospice program is available in your area, contact the nearest Social Security Administration office, your state or local health department, your state hospice organization, or call the National Hospice Organization Hospice HelpLine (800) 658-8898.

Portions excerpted from the Medicare Hospice Benefit a publication of: U.S. Department of Health and Human Services, Health Care

When hospices defraud the State Medicaid Program:

State Medicaid Fraud Control Unit AddressesWhen hospices defraud Private Insurance Health Plans
or Managed Care plans, you can contact the private insurance company directly and ask for the address or telephone number of their "Fraud control unit," or call the National Health Care Anti-Fraud Association (NHCAA) at 202-659-5955 and ask them for the address and telephone number. You can also ask NHCAA for the telephone number and address by e-mail at: fraud@nhcaa.org. They are not set up to take the actual complaint at their site, but can give out the individual addresses and telephone numbers you need to report fraud committed by a hospice against a private insurance company. Their website is located at: www.nhcaa.org.

HOSPICE FRAUD & SCAMS YOU MAY
ENCOUNTER: (HOW TO AVOID THEM)

There are numerous documented cases of fraud occurring in the hospice environment as well as in every other health care field: i.e. hospitals, nursing homes, home health care, HMO's, insurance, etc. Of course, if you only read the newspapers and watched TV you'd never know it at all. Hospice organizations routinely deny or minimize the significance of fraud in hospice, often stating that these are very rare exceptions and that most hospices provide excellent care. However, those of you who have worked directly in the hospice industry know from the inside that it is too easy for hospice administrators to set up situations that result in fraud.

Why Hospice Fraud is So Easy to Perpetrate

People generally trust their nurses and other health care workers. This is especially true when the nurse comes to care for the dying. People simply cannot imagine that the hospice itself will take advantage of the patient it is supposed to serve.

Hospices are often viewed as charitable, compassionate servants of the dying, when some of the hospices are actually ruthless businesses that are like wolves taking advantage of the sheep. News media are reluctant to report documented cases of hospice fraud, because the trend of the media is to promote hospice and the care of the dying. How can the media outlets, such as newspapers, TV and radio stations report on violations by local hospices when they have recently published articles promoting the very same hospices committing the fraud?

Hospice, because of its image as a compassionate service, attracts prominent business leaders in the local communities, and many of these prominent business leaders serve on the Board of Directors of the local hospices. The ol' boy network protects the hospice even if fraudulent practices are occurring. This network blocks news coverage, blocks action by local governments (even at the State government level) and effectively hushes up the serious abuses by hospices which are occurring.

As unbelievable as it may be, hospice administrators often DO NOT teach their staff and volunteers the full and complete regulations governing hospice care! They often give their staff inaccurate ideas about the regulations, saying that whatever the hospice is doing is absolutely legal, when it is actually felony health care fraud!

Hospices manipulate their staff into situations where they cannot provide the care needed by the patient, due to intentionally created shortages of staff in key areas such as "Continuous Nursing Care" for patients in crisis in their own home. By not making the effort to actually hire adequate staff, the administration makes sure they cannot provide nursing services as needed in the home, and the patient is forced into the hospice facility, against his will! The unpaid volunteers are always being recruited to fill in.

Hospices get paid on a "per-diem basis" which means they get a set amount of money per patient signed on, for each day the patient is enrolled in the program, regardless of how many services or medications they provide. The system of payment financially rewards hospices which skimp on services and enroll more patients.Hospice patients and families are in most cases completely isolated from other patients and families who might give them information which could protect them from fraud or inform them of their rights. In most cases, families are living at home completely immersed in the time-consuming and exhausting work of caring for their loved one.

When patients enroll in the hospice programs, the hospice admissions staff do not always provide full, informed consent. Since the patients and families are not fully informed of their rights, they do not know what services they are entitled to receive.

Patients and families are in crisis mode, grieving the imminent loss of the patient; they cannot muster the energy to fight the hospice's deception or exploitation, even if they do know that they're being taken advantage of.

There is so little time, in many cases, for the patient or family to resolve problems which the hospice may be causing, before the patient dies. So when a hospice under-serves the patient and family, it is out of the picture before anything can be corrected. Complaints from family members can fall on deaf ears at the hospice, and appeals to higher levels of management can result in patronizing insincere apologies from administrators who are paid to simply make the problem go away. Staff who cooperate with a hospice's plans for fraud are rewarded by promotions and given power within the organization. The hospice can give pay raises to those who go along with the policies, even though the policies violate the federal and state Standards of care for the industry.

Staff and Volunteers who complain about problems in the hospice are routinely harassed, intimidated and made to feel so uncomfortable that they resign, leaving behind them staff who are so afraid of speaking up that they keep quiet in order to save their jobs.

Common Examples of Fraud & Scams in Hospice

Many staff are unaware of the fraud occurring in areas other than their own area of the hospice's various departments. However, many staff are aware of such abuses yet remain silent. Taking advantage of the dying is one of the most despicable crimes one can think of. Yet there are, unfortunately, unscrupulous executive level hospice administrators who have no qualms about violating regulations and patients' rights in order to cash in on the opportunity to personally make extremely large fortunes while skimping on services to the patients.All areas of hospice care may be subject to fraud of some kind; there is no area of hospice care that can be ruled out as a possible area for fraud. What must be kept centrally in mind is that the hospice must provide the services needed to meet the actual care needs of the patient. The frequency of services and type of services is NOT determined by the hospice's apparent problems in staffing; the frequency and type of services is solely to be determined by your needs! The hospice is required to meet the needs of the patient and family. Some examples of hospice fraud are:

Hospices can reduce the frequency of home health aide visits to the patient, so the patient is visited less often than really needed.

Hospices can reduce the frequency of RN case manager visits to the patient by requiring the RN's to take on overly large caseloads or reducing the number of days each RN works per week. RN's may simply telephone to the patient or family to check on the patient's condition. A telephone call cannot substitute for an actual on-site physical assessment of the patient's condition by the RN.

Hospices can reduce the availability of RN's, home health aides, counselors, chaplains, bereavement staff, social workers and dietitians by consciously choosing to NOT hire adequate staff, or delay the replacement of staff who resign. Without adequate staff being hired by the hospice, these hospice staff will have overly large caseloads and will not be able to visit and serve the patients according to the actual needs of the patient.

Hospices sometimes use Licensed Practical Nurses (LPN's) or Home Health Aides to perform tasks which only Registered Nurses (RN's) may properly perform. They may use LPN's or Home Health Aides in roles which require an RN's supervision, but not actually provide adequate RN supervision.

Hospices can skimp on the medications given to the patient for pain! How? Probably every community has physicians who order inadequate or ineffective medications for pain control. Some medications for pain can be quite expensive. The hospice is legally obligated to make sure the patient gets the medications needed to control the pain and maintain patient comfort. When a physician does NOT order adequate pain medication, some hospices may refuse to intervene on behalf of the patient's comfort. They choose not to question the physician's orders and thereby leave the patient in pain, but the hospice saves money by so doing!

As cruel as it may seem, some hospices refuse to provide oxygen to patients who are short of breath or who need oxygen for other reasons. The staff tell the families it is not needed, even if the family make suggestions or inquire about it. The hospice saves money by not having to pay for the oxygen.

During a crisis, hospices can refuse to provide continuous around the clock nursing in the patient's own home (not a hospice facility) and tell the family and patient that the hospice doesn't have enough staff to provide care in the home. When the hospice tells the patient and family that there aren't adequate staff to provide care at home and thereby keep the patient at home, the patient is often manipulated against his or her will into the hospice facility, where the hospice will then collect fees for room and board, which it wouldn't receive if the patient were kept at home.

Even after manipulating a patient against his will into its own facility, the hospice can still bill Medicare, Medicaid or private insurance for the more highly reimbursed level of care, such as Continuous Nursing Care or Inpatient Level of Care. The Continuous Nursing Level of Care may be billed if the facility is licensed as a "home" and not as a nursing home or hospice inpatient facility.

Hospices can ask patients or families to privately pay out of their own pocket for services which already are being reimbursed, or will be reimbursed, by Medicare, Medicaid or private insurance companies. Because of the isolation of the hospice patient or family, the fraudulent billing to the patient or family may go undetected completely. If the patient is already dead and the family wants to put the whole matter behind them, who will report the additional billing to the Office of Inspector General? If the patient and family do not know what is being billed to Medicare, Medicaid or private insurance companies (and they do not know what the hospice is billing) they have no way of realizing that double-billing is occurring. If confirmation of reimbursement from Medicare, Medicaid, or insurance companies arrive in the home several months later, or even later than that, the family will often not even read the confirmation of billing or will not understand that double-billing has occurred.

Hospices can make fraudulent or otherwise illegal arrangements with nursing homes or hospitals for referrals. Kickbacks to the hospital or nursing home for referring patients to the hospice are illegal. Patients and families would have no way of knowing about such kickbacks.

What to Look For

Whatever your particular situation, if your loved one is NOT getting the services needed, if the hospice is trying to talk you into transferring your loved one to their facility against his or her will, if your loved one is NOT being kept comfortable, if there is inadequate staff and you are getting exhausted while caring for your loved one, you must demand that the hospice provide the services needed to meet the needs of the family and patient, whether living at home or in any facility. The law requires the hospice to meet the needs of the patient and the family!

What to Do

It is crucial that you read all the printed literature, documents and contracts you have with the hospice. These pamphlets, brochures, contracts and papers must (by law) inform you of your rights to the various services available through the hospice. Most patients and families do NOT read all this literature, and thereby they lose their greatest protection from exploitation...KNOWLEDGE OF THE REQUIRED SERVICES. Knowing what services are required to be provided will allow you to make informed decisions about the care your loved one receives. Knowing what services are required will help you protect your loved one from exploitation.

If you are not getting the services needed to meet the patient's and the family's needs, you need to speak with the RN case manager. If you get the runaround or sophisticated excuses, you must demand to speak with the hospice's Medical Director and Manager. If you still do not quickly get proper action to correct the problem, put a complaint in writing and send it to your State's Bureau of Health Systems (which is responsible to inspect the hospice) immediately and also give a copy to the hospice.

You may use the form provided on this website to make a complaint:
Click here for Complaint Form

You can count on the hospice to move quickly to correct the situation if you actually put a complaint in to the State. If you believe there is actual fraud occurring, do not hesitate to contact both the U.S. Office of Inspector General and your regional U.S. Attorney's office. They will investigate your case and may find confirmation of long-standing patterns of hospice fraud. For direct links to the OIG and U.S. Attorney's Office/Department of Justice, see the section within this website for "Links to Put in a Complaint about Hospice Fraud."

What the Inspector General Says About Hospice Fraud in Nursing Homes

Although hospices and hospice organizations will deny it, the United States Department of Health and Human Services - Office of Inspector General (OIG) has investigated and clearly documented many cases of fraud in hospice. Because of so many cases of hospice fraud occurring, in 1995, the OIG released its Fraud Alert Bulletin detailing types of hospice fraud that may occur when the patient is residing in a nursing home. This report is available directly from the OIG at its website at the following web address:

http://www.oig.hhs.gov/fraud/docs/alertsandbulletins/hospice2.pdf

I'm a volunteer with Hospice. I may not be volunteering any longer though. After a 3hr meeting with my Hospice and many frustrated tears, swollen eyes, I was asked and then told, to no longer visit the lady who I was helping look into a clinical trial. I have her records and confronted them and challenged them on many issues I was having with
their reasoning. I was told that I should have waited on the hospice nurse this past Saturday to come see about her instead of taking her to the hospital. She was impacted and was having pains that made her cry out as if in labor. When I called the nurse I told her about the pain and she had an attitude and told me that it would be 1 1/2 or 2hrs
before she could get there. I asked if I could take her on to the hospital then. She didn't answer me. Then she said she'd call me in a bit. I was informed today that I should have kept patient at home until the nurse came. I said I can no longer volunteer if I have to keep someone in pain without help. That nurse lied about a lot of things that got me in trouble that I'm having problems with. How do you justify someone's suffering? This is the second home patient I've had. The first one I had started declining as soon as he was given a different med along with morphine. He didn't even want the morphine. He died in a week. Declined so fast. The Thurs before he died on Friday, I had a dream where he was in a bed and sat up with a scared and angry look on his face and he said "they're killing me". I woke up and blew it off as his not wanting to use the morphine and so on....anyway she's been given this medicine and I'm scared for her not getting the chance to see if there was a clinical trial for her. I faxed a letter ( some of her records) to my onc who is doing 3 different ones pertaining to her type of cancer. Her cancer has just recurred about 3 months ago with mets to the super clavicle lymph node. Today I was assured that hospice social worker would call my doc and look into the trials. I hope he reads my reports first. I'm confused and disturbed by all that is going on. part 2 tomorrow.... take care all, I'm exhausted and mentally worn out over this.

Hello everyone, (from a pending Hospice Volunteer)

I'm putting these things out here for awareness. In some cases Terminal Sedation might just be needed to quicken a terminal and suffering patients death if they choose. This is just my opinion. I've lost one person within a week after he was in the hospital and
given so many drugs and morphine. He came home on Monday, after Hospice was trying to keep him there another day because he was given ativan too. I refused and told them to call his sons and tell them to come take him home like they said they would. He was in the bed when he got home and never got up again. The previous Friday, when I was sitting with him, he was fine and normal. He didn't want to be alone because he said
he had a dizzy spell and almost fell down. At the hospital he flipped out, had seizures and spaced out and would fall over on the bed from sitting position. This other new patient, took what looked like a whole dropper full of Roxonol after the nurse fixed her impaction problem. The nurse told her to go get in the bed. From sitting up and being able to walk and live alone, I'm going to sneak over and find out if she's sedated to bed. That means they won't be Calling my onc about the clinical trials. They told me they would. She's the one who brought up this whole thing about not understanding what's going on. She knew her prior choices (other than Hospice) were more chemo and stint and so forth. I think someone told her that was no longer available after she
decided she'd like to live after all. I asked her if she knew about clinical trials she said yes but her doc didn't offer any suggestions. Because I didn't tell hospice about this, they don't won't me to visit with her no more. Her Caregiver is the Jehovah's Witnesses that are
pissed that I've brought this up with her. She told me they were in support. Which is it? I told Hospice they probably just want to inherit her house since she's got no family. I'm not knocking all Jehovah's Witness. There just smells like a rat in this bunch. I would think they would be happy and support a clinical trial. I was told they never even wanted a volunteer to go over there unless they called for one. Control, Control, Control. I've looked on the internet and found one article that suggested a patient living alone without family will be terminally sedated once they appear to become a problem. Or more needy, unable to care for themselves alone. I would love to hear from a former hospice nurse that knows about such things and what can I do to help this patient? Love
to All, Susan A.

Hi all,

I'm so stressed out. I'm worried about that woman and can't find out anything. I broke down and called her last night and she was alone and not in a coma, Thank God. I called my Onc today but they never called me back. I just want to know if she can get in the clinical trial or not. If not, then I'm not going to worry with this part no more. If yes, I'll have to go over and talk to her and explain that the Jehovah Witness may not support this. If she can and does want the clinical trial I'll ask Hospice to see if they can help, if not and they threaten me again, I'll quit. Saturday I'm going to talk to the former Hospice nurse so I'll know if my hospice is trust worthy or not. If they are not, I'm still going to volunteer, if they allow it so I can help the patients.

I met with the former Hospice nurse yesterday. She said she could tell by the look on my face last weekend that I was not understanding what was going on before my eyes. She confirmed everything that I was suspicious of. The awful part was she told me things that I wasn't even aware of. I don't want to go into detail because I told her I wasn't' trying to get her in trouble or Hospice, I just needed to know some things. I felt a great weight lifted from me. I was feeling so guilty and confused. All I did was "almost" throw a monkey wrench into their plans for the patient. Now I don't even believe the Jehovah witness had anything to do with keeping her from the clinical trial. I don't regret volunteering. I still encourage it, especially if you can get the poorer patients (for obvious reasons)and patients without family. I just can't do it anymore after the way they treated this whole situation and me. I am going to look into volunteering on my own in a nursing home. I'm also going to try and come up with some tips on "how to use Hospice
safely" on my web site without it getting me in some trouble. Do a Google search on Roxanol and Hospice and see what's out there on the internet. I think in some situations Hospice can be a great thing to have, but MONEY and Insurance rule the world.

Date: Mon Apr 25 2005 -

I saw patient Yesterday. I went by there basically to see how she was and pick up a book I had loaned her. I think I forgot to mention I mailed my badge in to hospice this Saturday with a final report. Anyway the Jehovah's Witness/Caretaker was there too. I told them that I don't know what Hospice has told them but I wasn't there as a volunteer because I had to quit. I told them that Hospice told me you, (Jehovah's wit.) was angry with me and I wasn't supposed to be coming by unless hospice told me too and so forth and so on. He was very nice and said this is all up to her and I'm not angry about anything. (his wife outside in the car whom I spoke with on my way out said he was upset about her getting an experimental drug treatment.) I told her that Hospice was supposed to look into that and explain that to them but they never did. Jeh.Wit. have taken her off most of the sedatives and when I saw her, she looked great!!! hospice has been trying to get her to stick with liquid diet but she's eating what she wants. I told Jeh.Wit. to especially
watch her dosage of Roxanol but she really just can't go off of that drug because of potential side effects. She is only taken the very smallest amount only when she needs it. They seem a little suspicious of hospice's drugs so I think she'll be in good hands. I was welcomed back whenever I want to come visit. I was so happy to see that she's being
taken care of.

Well it's been a month (April 21st?)since I saw her. Strength was returning and she was doing good. I had gotten her on the phone with ACS. They were supposed to mail her some clinical trial info after a long phone interview. She never got the forms, or did they just not make it to her hands?

Today, June 13th, I was digging thru some of my old newspapers and saw that she had died May 26th. About one month after my last visit.

If you have a great caretaker, take a moment to tell them how much you appreciate them. I'm all for compassionate dying at the request of the person that is dying, if in too much pain. I'm not for covenant killing because someone is a burden or their insurance ran out.

love to all, Susan A.

OVERDOSE (Roxanol Morphine)