Hospice Care Questions and Answers

What is hospice and palliative care?

Hospice is a compassionate approach to care, the goal of which is to help people with serious illness live life fully, maintain their dignity, and keep control over their lives. In medieval times, hospices were inns of rest which "lodged, cherished and refreshed" the weary traveler, the sick, and the dying. Read More
Today, hospices provide medical care as well as emotional and spiritual support to people and their families facing life-limiting illness, whether this is in homes, hospitals, adult facilities, nursing homes, group homes or hospice units at local hospitals. Hospice is available to anyone with an illness whose life expectancy is measured in months, rather than years.

The term "palliative care" refers to any care that alleviates symptoms, even if there is hope of a cure by other means. It is an approach that focuses on the relief of pain, symptoms, and emotional stress brought on by serious illness. Your disease doesn’t have to be terminal for you to qualify for palliative care and, in the U.S., many palliative treatments are covered by Medicare. In some cases, palliative treatments may be used to alleviate the side effects of curative treatment, such as relieving the nausea associated with chemotherapy, which may help you tolerate more aggressive or longer-term treatment.

Why hospice?

Unique physical, emotional, spiritual, social and financial needs occur during the final phases of life-limiting illness. Hospices provide experienced, skilled specialists who give needed help and support during this difficult time. The hospice team works with the attending physician and family to develop care that meets the patient/family needs and wishes concerning treatment and lifestyle. Read More

For many in Western society, death remains a taboo subject. Consequently, many patients and their families remain reluctant to even discuss the possibility of hospice care or palliative care. While most people would prefer to die in their own homes, the norm is still for terminally ill patients to die in hospital, receiving treatment that is either unwanted or ineffective. Their loved ones usually have only limited access and often miss sharing their last moments of life.

Some families who do choose hospice care often do so only for the last few days of life, and later regret not having more time saying goodbye to their loved one. To ensure that your family understands your wishes, it’s important for anyone with a life-limiting illness to learn all they can about hospice and palliative care and discuss their feelings with loved ones before a medical crisis strikes. When your loved ones are clear about your preferences for treatment, they’re free to devote their energy to care and compassion.

Who is eligible for hospice care?

You can get hospice benefits when your doctor and the hospice Medical Director certify your prognosis as not longer than six months. This applies to anyone of any age, with any type of illness. While patients must have a doctor's referral to enter hospice, the patient, family and friends can initiate the process by contacting a local hospice program.

How long does hospice care last?

Hospice care is intended for people with 6 months or less to live if the disease runs its normal course. If you live longer than 6 months, you can still get hospice care, as long as the hospice Medical Director or other hospice doctor recertifies that you’re terminally ill. Read More

Hospice care is given in benefit periods. You can get hospice care for two 90-day periods followed by an unlimited number of 60-day periods. At the start of each period, the hospice Medical Director or other hospice doctor must recertify that you’re terminally ill, so you can continue to get hospice care. A benefit period starts the day you begin to get hospice care and it ends when your 90-day or 60-day period ends.

Who uses hospice care?

Hospice programs are for anyone of any age with a life-limiting illness. Hospice care is available for eligible patients having a diagnosis, or combination of conditions, that include: Stroke and Coma, Cardiovascular disease, “old age”, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease), End-Stage Dementia, Failure to Thrive (adult), HIV disease, Neuromuscular Disease, Liver Disease, Multiple Sclerosis, Parkinson’s Disease, Renal Disease, and Pulmonary Disease.

When is the right time to contact hospice?

At any time during a life-limiting illness, it's appropriate to discuss all of a patient's care options, including hospice. Admission to hospice is based on a physician's clinical judgment that hospice care would be appropriate for a patient, given the expected course of an illness. The following are signs that you may want to explore options with hospice care:

  • You've made multiple trips to the emergency room, your condition has been stabilized, but your illness continues to progress significantly, affecting your quality of life.
  • You've been admitted to the hospital several times within the last year with the same or worsening symptoms.
  • You wish to remain at home, rather than spend time in the hospital.
  • You have decided to stop receiving treatments for your disease.

What does hospice care provide to the patient?

Depending on the patient’s circumstances and stage of care, a hospice interdisciplinary team (IDT) may provide any combination of the following services: Read More

  • Physician Services. Your doctor approves the plan of care and works with the hospice team. In a full hospice program, a hospice Medical Director is available to the attending physician, patient, and hospice care team as a consultant and resource.
  • Nursing Care. Registered nurses monitor your symptoms and medication, and help educate both you and your family about what's happening. The nurse is also the link between you, your family, and the physician.
  • Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may include helping you explore what death means to you, resolving "unfinished business," saying goodbye to loved ones, and performing a specific religious ceremony or ritual.
  • Social Services. A social worker counsels and advises you and family members, and acts as your community advocate, making sure you have access to the resources you need.
  • Respite Care. Respite care gives the family a break from the intensity of caregiving, providing an opportunity to mentally, emotionally, and physically rest from the stresses of being a caregiver.
  • Home Health Aides and Homemaker Services. Home health aides provide personal care such as bathing, shaving, and nail care. Homemakers may be available for light housekeeping and meal preparation.
  • Trained Volunteer Support. Caring volunteers have long been the backbone of hospice. They're available to listen, offer you and your family compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
  • Physical, Occupational, and Speech Therapies. These hospice specialists can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.
  • Inpatient Care. By the same token, even if you are being cared for at home, there may be times when you'll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Sometimes medical intervention will be recommended to ease the dying process (for example, an IV drip with pain medication), requiring round-the-clock nursing care. Thus, a facility may be a better choice. Your hospice team will arrange for inpatient care, and remain involved in your treatment and with your family.
  • Bereavement Support. Bereavement is the time of mourning we all experience following a loss. The hospice care team will work with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting your family at specific periods during the first year, as well as phone calls, letters, and support groups. The hospice will refer survivors to medical or other professional care if necessary. Knowledge of this service is often a comfort to the patient who will leave a loved one behind.

How do I choose a hospice care service?

Finding a hospice care service

  • Ask your doctor what hospice programs are available in your community.
  • Consult with friends who have used hospice services in the past for their loved ones.
  • Contact your hospital's social worker, discharge planner, or a care manager, any of whom should be able to recommend local hospice providers and facilities.
  • While hospitals may have their own hospice programs, you always have your choice of hospice care provider.

Tips for selecting hospice care providers

People are sometimes reluctant to question doctors or other medical professionals about their care. Yet nothing is more important than the quality of care you will receive during this final phase of life. When you and your family are choosing your hospice team, be sure to ask about:

  • The hospice's patient-to-caregiver ratios for each hospice discipline.
  • Average frequency of home hospice visits.
  • Response time and procedures followed for after-hours questions and concerns.
  • Continuity of care (i.e., having the same care providers over time).

Also, ask whether the hospice will develop a written treatment plan that is given to all service providers for smooth coordination of care. You and your family members should receive copies of the care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor.

What else do I ask a hospice care service?

  • How much responsibility is expected of the family caregiver? What help can the hospice offer with filling in around job schedules, travel plans, or other responsibilities?
  • Is the program accredited by a nationally recognized accrediting body, such as the Joint Commission on Accreditation of Healthcare Organizations? This means that the organization has voluntarily sought accreditation and is committed to providing quality care.
  • Is this hospice program Medicare certified? Medicare certified programs have met federal minimum requirements for patient care and management.
  • If applicable, is the program licensed by the state? Are caregivers licensed and bonded?
  • Can the program provide references from professionals, such as a hospital or community social workers? Talk with these people about their experiences.
  • How flexible is this hospice in applying its policies to each patient or negotiating over differences? If the hospice imposes conditions that do not feel comfortable, that may be a sign that it’s not a good fit.
  • Is a care plan carefully developed for each patient and their family? Does a nurse, social worker or therapist conduct a preliminary evaluation of the types of services needed in the patient’s home?
  • What are the program’s policies regarding inpatient care? Where is such care provided?
  • Is there a 24-hour telephone number you can call with questions? Try it to see how the hospice responds to your first call.

How does one get involved with hospice services?

There are two ways. Your doctor or hospital/care facility case manager may call, or you may call. If you or someone from your family calls, the agency will contact your doctor to discuss the illness and verify that hospice is medically appropriate. The patient actually becomes admitted to hospice by signing a consent form electing hospice care.

Can a hospice patient continue with his or her own doctor?

Yes. A hospice Medical Director is available for consultation with the patient's doctor. Hospice nurses will work with the patient's doctor on all aspects of care. If for some reason your physician is unable to visit you, a hospice physician who specializes in comfort care is available to visit you and consult with your hospice care team if you choose.

Does hospice provide 24-hour nursing?

No. Hospice nurses visit weekly or more frequently as the patient's condition dictates. A hospice nurse is also accessible 24 hours a day by phone to assist with questions or emergencies and can make a home visit if needed. Hospice pharmacies are available off-hours to ensure that changing medication needs can be met at any time. Medications are delivered to the patient's residence. The family can also privately hire shift nurses to provide 24-hour nursing if the family has health insurance that will reimburse them over and above hospice or if the family is financially able to privately hire.

Who pays for hospice?

Most health insurances, including Medicare, provide full coverage for hospice care, usually with no co-payments or deductibles. In addition, most Medicaid and commercial insurance plans also offer excellent coverage for hospice services with few, if any, out-of-pocket expenses. Read More

Patients who are under insured or who have limited resources can apply for financial assistance, which is funded by community donations.
Hospice care at home is free: In 80% of cases all medical services, medication, and equipment related to the admitting diagnosis are paid in full by Medicare.

In order to qualify for the Medicare hospice benefit:

  • Your doctor and the hospice medical director certify that you’re terminally ill and have 6 months or less to live if your illness runs its normal course.
  • You sign a statement choosing hospice care instead of other Medicare-covered benefits to treat your terminal illness. (Medicare will still pay for covered benefits for any health problems that aren’t related to your terminal illness.)
  • You’re eligible for Medicare Part A (Hospital Insurance).
  • You must get care from a Medicare-approved hospice program.
  • Your physician must re-certify you at the beginning of each benefit period (two periods of 90 days each, one of 30 days, and an indefinite fourth period).
  • You must sign an elective statement indicating that you understand the nature of your illness or condition, and of hospice care. By signing the statement, you surrender your right to other Medicare benefits related to your illness. (A family member may sign the election statement for you if you are unable to do so.)

Does the hospice program pay for medications and medical equipment?

The “Hospice Benefit” pays for medications related to terminal illness under which the patient was admitted and the medical equipment to keep the patient safe and comfortable. This includes items such as: medications that treat the life-limiting illness, pain medications, a hospital bed, walker, and oxygen. Most items directly related to their hospice diagnosis are covered. Some items not related to the hospice diagnosis might not be covered but these items will be clearly identified and communicated by the hospice team. Enrolling in hospice does not mean a patient loses all other insurance benefits. For example, if a patient is injured in an auto accident other insurance coverage would apply.

Is caring for the patient at home the only place hospice care is offered?

No. While 85% of hospice care is provided to patients in a personal residence, some patients live in adult facilities, nursing homes, group homes or hospice centers.

How can in-home care be managed and how does it work?

The majority of hospice care takes place in the home where the patient is in a familiar, comfortable environment and surrounded by family. In-patient hospital services are available if symptoms cannot be properly attended to at home. Often, a patient’s symptoms can be stabilized and the patient can then be returned home. The hospice program’s interdisciplinary team develops a partnership with the patient and family caregivers to maintain safe, high quality care.

Why do I keep hearing about terms like: “planning”, “living wills”, “advanced directives”, “do not resuscitate orders”, “power of attorney”, “medical care proxy” “Five Wishes” and “Physician Orders for Life Sustaining Care”?

These items all refer to ways that enable a person to exert greater control over what happens to them in the event of a medical emergency or serious medical condition. It is a huge advantage to address these issues ahead of time rather than when a quick medical decision must be made in a time of crisis. These issues impact oneself, a spouse as well as other family members and often have a profound effect on individual and family financial resources.

How can I learn more about hospice?

To obtain further information, to apply to be a volunteer, or to inquire about hospice speakers, call Interim Healthcare Foundation, Inc. at (806-722-1968).

What is the story behind the Interim logo?

As we envisioned our logo, our purpose was to communicate a new day with the sun shining. With the brightness of a warm sun with energy, millions or rays of light, and the beginning of a new day with the sun rising, it seemed this was the context of our foundation. We are about a new day, helping others to find resources to continue or begin anew in life’s journey. If we are about anything, it is about hope and finding peace amidst the hurt.

When A Death Occurs

When a death occurs, the order in which things need to be done often depends on where the death occurred. But, one thing should always be remembered: your heightened emotional state upon the death of a loved one. That's why we suggest that you ask a friend for help - someone who is more able to think clearly, and give you the support you need. Read More

When A Death Occurs

When a death occurs, the order in which things need to be done often depends on where the death occurred. But, one thing should always be remembered: your heightened emotional state upon the death of a loved one. That's why we suggest that you ask a friend for help - someone who is more able to think clearly, and give you the support you need.

The first thing in handling this tragic but possibly predicted occurrence in a hospice situation should have happened months ago – talk about the patient’s wishes. This is one of the hardest things to do is to talk and plan out a funeral or last wishes months before a death occurs. If you have problems in doing this, ask a friend, an objective family member or pastor. It doesn’t mean it is the end but it is smart to plan because of the pain the family will experience at the time of death. Do everyone a favor and get wills, last death concerns out of the way for everyone and it does relax the process.

  • At Home or At Work

When a death occurs at home or in the workplace, a family member or co-worker should contact emergency personnel and the person's physician if he or she was under a doctor's care. If the death occurs at home with family or friends present, and the person is under a physician's care, the family will want to call the funeral home directly.Read More However, if the death occurs in a residence and no one is there at the time of death, the police will need to be notified and respond to the residence before the deceased is removed from their home.
If in any case you are not sure of who to notify or what to do, you may you’re your funeral of choice and they should willingly assist you in notifying the proper agencies.

  • While Under Supervised Care

When a death occurs in a care facility, such as a hospital or nursing home, the professional staff will notify you and the necessary authorities. If the name of the funeral home has been left with them, the institution will notify the funeral home at the time of the death. The funeral director will contact you immediately following their notification to help you proceed. (However, we suggest you contact the funeral home immediately, so you've got the reassurance you need that all is taken care of properly.)
If a loved one was in the care of a hospice program, a hospice representative will give family members instructions and procedures to follow. The coroner/medical examiner will be notified by hospice. Following their release the hospice will contact the funeral home. It is always a good idea for the family to contact us immediately so that we will be aware of the pending call from hospice.

  • Widening the Circle

The Funeral Home are generally well experienced professionals who can provide much of the information you need, emotional support and compassionate guidance.
While you may ask the funeral home director any questions at this time, you will be able to discuss the arrangements in detail later when you meet in person. During this initial call, the funeral director will gather information to be able to transport your loved one to the funeral home.
The funeral director may ask you several questions, including whether your loved one made any pre-arrangements. The director will also schedule a date and time for you to meet at the funeral home and will let you know what you should bring with you. Others you will need to call are:

  • Family members and friends
  • Clergy or other spiritual advisors
  • Those Important Questions

If there is no pre-plan in place, there are several other questions that you may have to have answered in regards to the death of your loved one:

  • Do I have to have embalming?
  • Do I need to purchase a casket?
  • What about cemetery arrangements?
  • Does the family have to engage the services of a minister?
  • What type of service should we have?

One of the best things to consider for many funeral homes is to make pre-arrangements. This is as simple as outlining your wishes to having all of the details written down and the financial arrangements prepaid.

  • What to Expect When You Arrive at the Funeral Home

One of the first things the funeral arranger will do is to provide you with our general price list. He or she will then guide you through the entire arrangement process, explaining how you can create a memorable personal celebration of your loved one's life. This is not a one-way conversation; they will want to hear your ideas and desires, and use them as the foundation for the arrangement process.
This process may include:

  • Preparing and filing the official death certificate
  • Scheduling the location, date and time of services or events
  • Selecting a casket, urn or other items
  • Preparing an obituary notice
  • Scheduling vehicles
  • Selecting pallbearers

You may also sign necessary authorizations or make arrangements to have them signed by the appropriate family members.
They may want you to bring any photos, a favorite song, or memorabilia so that you and your funeral arranger can better discusshow you would like your loved one to be remembered. Having these things, and knowing their favorite song or favorite gathering place – even their favorite activity – will help us create a truly fitting memorial service.
The funeral arrangers will assist you in planning a loving tribute that captures the spirit of the person whose life you wish to honor. The funeral arranger will discuss personalization with you during your arrangement conference.
The following checklist will help you remember what information about the decedent and items will be needed when meeting with a funeral arranger.

  • Full legal name
  • Home address
  • Social Security number
  • Date of birth
  • Place of birth
  • Father's name
  • Mother's maiden name
  • Veteran's discharge papers (DD-214)
  • Recent Photograph
  • Highest education
  • Occupation
  • Place of burial (if applicable)
  • Clothing
  • Clergy name and phone number
  • Survivors (name and relationship)
  • Insurance policies (if applicable)

Just a note of being a smart consumer: Make sure you have “checked out the funeral home and its reputation.” Many funeral homes are owned by large “for profit chain companies” much like a Walmart model. They are profit driven and many times will not consider plans that might be considered more affordable. Talk to friends or pastors who will be honest with you about the funeral home and its staff. In a time of grief, families become victims of this industry. Be smart and make these arrangements after studying who are the best providers. Shop around, ask questions, visit the home – after all, the costs can run from $7,000.00 to $25,000 depending on casket costs and extra services.
If you don’t have a minister, talk to your hospice chaplain. They will many times be your best reference and can provide many services including the funeral itself in absence of a family minister.

Special Situations

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."Read More

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.

It is good to look at the history of certain healthcare programs. For example, recently the government is reducing the home care rate and program consultants told home health owners 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 consultants 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).

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.

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:

It is distressful to hear such a recommendation. 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 certified 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.Read More

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.

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.

Question:

My family has concerns regarding my brother and lung cancer. 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.

Answer:

It is not usual for a cancer patient to be kept in a hospital long term 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.Read More

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 long term 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. 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.

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.

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. Read More

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.

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.

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 him 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.Read More

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!

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.

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.Read More

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.

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.


HOSPICE FACT AND FICTION

Read More

Fiction – Hospice is where you go when there is nothing more a doctor can do.
Fact – Hospice is not a place but a comprehensive program utilizing an interdisciplinary team that provides medical, emotional and spiritual care focusing on comfort and quality of life while also supporting family caregivers.

Fiction – Hospice is only for the last few days of life.
Fact – Hospice patients and families can receive care for 6 months or longer, depending upon the course of the illness. Eligibility standards indicate a life expectancy of 6 months or less but, in many cases, this decision is a reasonable estimate based upon available information which cannot account for all factors.

Fiction – Hospice is giving up hope; it’s better to fight for life.
Fact – Most terminally ill patients experience less anxiety by refocusing hope on what might be realistically achieved in the time remaining. If continuing uncomfortable and painful curative treatment for an illness is fruitless, hospice patients benefit more from having their symptoms treated instead.

Fiction – Hospice makes death come sooner.
Fact – Hospice neither hastens nor postpones dying. The aim is to improve the quality of remaining life so patients can enjoy time with family and friends and experience a natural, pain-free death. In some cases, hospice care can extend life.

Fiction – Enrolling in a hospice program means giving up all medical treatment.
Fact – Enrolling in hospice means that a patient voluntarily stops seeking curative treatment, such as chemo-therapy or surgery, in favor of treatment that prioritizes patient and family directed care focused on symptom control and pain relief. Exiting a hospice program is easy and can be done in a matter of hours. A patient is not disqualified from other existing insurance benefits if, for example, he or she decides to resume curative treatments.

Fiction – A hospice patient who shows signs of recovery can’t return to regular medical treatment.
Fact – If a patient’s condition improves, they can be discharged from hospice and return to curative treatment, or resume their daily lives. If need be, they can later return to hospice care.

Fiction – A hospice patient can’t change his or her mind and return to curative treatment even if their prognosis hasn’t changed.
Fact – A patient can go on and off hospice care as needed—or if they change their mind and decide to return to curative treatment. They may also enter hospital for certain types of treatment if it involves improving their quality of life.

Fiction – Hospice care is limited to a maximum of six months.
Fact – In the U.S., many insurance companies, as well as the Medicare Hospice Benefit, require that a terminally ill patient has a prognosis of six months or less to start hospice, but a terminally-ill patient can receive hospice care for as long as necessary.

Fiction – Everyone dies in a hospital.
Fact – Hospice goes to the patient’s home, a nursing home, an assisted living facility or hospice residence: wherever the patient decides to be. Sometimes patients need to go to the hospital for short-term stays or to other facilities for more intensive care. Hospice services and benefits continue.

Fiction – Good care at the end of life is very expensive.
Fact – Medicare and Medicaid beneficiaries pay little or nothing for hospice services, and most insurance plans, HMOs and managed care plans include hospice coverage. Hospice services for U.S. citizens aged 65 and older are always covered.

Fiction – Families are not able to care for people with terminal illness.
Fact – Hospice programs provide training and support for family members to care for their loved ones. A caregiver is not alone, being able to consult with skilled providers on their regular visits and by telephone at all times. A “family member” may be a close friend of the family.

Fiction – Hospice is just for the elderly.
Fact – Hospice serves anyone who is eligible regardless of age.