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Recent Hospice and End of Life Advice

    The question asked was: Does hospice allow power of Attorney in charge of dying mother to give more comfort medication than prescribed by hospice nurses
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    Barbara B. , Geriatric Care Manager answers:
    I would suggest you talk with the hospice staff to determine if your mother can have more medication. This is never a cut and dried decision.

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    My partner is in home hospice. How do I let my partner be in hospice without eating or drinking? Her refusal to eat or drink is making me uncomfortable and I feel that I am helping her suffer more.
    It seems she should be able to take in fluids food but she will not. She is very weak, and cannot move herself. But maybe she needs pallative care and can get well? If she is prolonged dying why or how do I know hospice is the right choice? Maybe fluids and food and will help her get well.
    She tells me, and repeated just last night, that what she wants is "to die now". She sleeps most of the day but when awake she will not let me give her Boost, water, or puree foods. She seems strong to withstand this so maybe she can withstand care with food and water. Help me with your info. please.
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    margaret d. , answers:
    You need to honor your partner's request and not force food and fluids if they are not wanted. The body is shutting down in preparation for death.
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    janet w. , answers:
    Your partner is telling you she is ready to die. Take this time to be with her, tell her how much you love her and cherish the time you have had. Respect her wishes and allow her to die with dignity.
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    Jacqueline W. , answers:
    Wow, this is a very heartbreaking situation for caregivers of persons nearing end of life. It may seem strange but at this stage of life your presence is their greatest need. Refusing food & water is their body's way of saying they don't need food or water anymore. Their body is naturally shutting down and is unable to use food and water the way it could before. This doesn't mean there is nothing you can do for your loved one. Gently rubbing their lips and mouth with a moist swab and using a balm on their lips might be comforting not only for them but for you as well.

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    My mother is 91 years old. She has an Excellus PPO plan. Will her medicare or plan cover hospice care? Thank you.
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    Dianne N. , answers:
    It is likely that your mother's Excellus PPO plan is a managed care plan. As such Excellus contracts with Medicare to provide beneficiaries with all Part A & Part B Medicare benefits. Medicare Part A provides coverage for hospice care (up to 210 days) without a deductible for a Medicare-insured person who has been medically certified to have a life expectancy of six months or less. Therefore, your mother's Excellus PPO plan will be paid by Medicare for your mother's hospice care as long as your mother's physician has medically certified her.
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    Ronald F. , Elder Law Attorney answers:
    Generally, hospice is covered by Medicare. You should confirm that with the hospice provider or contact Medicare Rights Center. However, you should know that if hospice is provided in a nursing facility the room and board of the nursing facility is not likely to be covered by Medicare. If receiving hospice at home is not the appropriate care plan and a nursing facility is required, you may need to consider accessing Medicaid to cover room and board.

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    My grandmother is 92 years old and has dementia. Her eating habits have changed and she has been losing much weight. I also have recently noticed that her fingers are not getting any flow of oxygen. There seems to be poor circulation and her fingers are turning dark.
    Is now an appropriate time for Hospice to step in? Should I begin preparing for the end of her life? Are the symptoms described above signs that she is going to die soon?
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    Candice B. , Nurse and Care Manager answers:
    Your question poses many more questions. When is the last time your grandmother saw her primary physician? Is he aware of her weight loss and bluish cast on her fingers? There are several reasons for weight loss, dementia being only one of them. I would have to assess your grandmother fully to give you more specific answers. As far as end of life planning it is never to early to start. Make sure her legal documents are up to date, especially her durable power of attorney and living will.

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    My elderly Mom is 93. She is failing quickly over past 3 days, after 2 years of steady decline. She does have a DNR (Do Not Resuscitate) and Advance directive in place with her Doctor. She has always expressed her desire to die at home.

    My question is: Since it looks like it could happen quickly as she wished, and I don't want to drag her around to doctors etc.... If/when I discover she has passed, who do I call first to prevent confusion, further upsetment, and unnecessary delay of her final peace? We live in PA, are there legal issues I have not addressed?
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    William B. , Geriatric Care Manager answers:
    First of all, if it appears that your mother is close to dying, she would be a candidate for Hospice Care. Her Dr. can order this if she agrees. once she is being monitored by an approved Hospice Agency her comfort and pain management issues will be addressed. The Hospice nurse can also pronounce death once it occurs. After death is confirmed, you would follow her instructions regarding undertaker and burial arrangements. I'm sorry that you are dealing with this difficult situation. If you need anything further, call me.

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    My sister was told to put my Mom into Hospice but refuses. (My sister is also dying from cancer and expects me to travel every night after work to spend the night with my Mom. I have to leave for work 1 1/2 hrs earlier than usual to be on time.) I am wondering if I need permission to get Hospice nurses for my Mom? I don't mind helping out but I ended up going to the hospital with chest pains and they told me it is stress. Please help!!! Thank you Elmer
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    Kim S. , Geriatric Care Manager answers:
    It sounds like you are in a very difficult position. Is your Mother able to express her own wishes in this matter, or is there an established Health Care Proxy for her? Please realize that Hospice does not provide 24 hour care, so even if she became a Hospice client, there might need to be other sources for caregiving provided. If you are interested in consulting a Geriatric Care Manager, please reach out.

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    Our father will be 98 this February. He currently takes medication for high cholesterol and high blood pressure. He has severe Dementia and no quality of life at all. My sisters and I are wondering if we can take him off his medication to let nature take it's course. He lives in California. I live in Nevada.
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    Victoria S. , answers:
    It is common practice when someone is admitted to hospice, all non essential medications are discontinued. They then add medication for comfort only. There are many factors that determine whether you can or should discontinue life sustaining medication such as, how does the person in question feel about it? Do they have legal documents that support this desire? There could definitely be legal ramifications especially if all family members are not in agreement. Without knowing more about the situation that is the best I can offer. My best to all involved.
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    Christina L. , answers:
    That has been my experience as well. Hospice is not a "cookie cutter" approach to end of life care, Many things are decided and incorporated on a "case by case" basis. When it is really towards the end, then normally all regular meds are stopped except for those to ease the transition such as morphine, haldol, or ativan, scopolamine,
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    Carolyn V. , Geriatric Care Manager answers:
    My suggestion is to consult the primary physician or doctor that has prescribed these medications. If your father has severe or later-stage dementia perhaps dialogue whether now is the time to consider hospice care may be of benefit if your father has limited or no quality of life. Medications can be difficult to swallow for those individuals with end-stage dementia and some medications may no longer be needed, however, a physician review is recommended. My other question is whether your father expressed in writing or verbally his end-of-life wishes? If so I recommend you review these document/s as this may help guide your family in decision making. These documents are referred to as Durable Health Care Power of Attorney, Advanced Directive, or Living Will. Other states may have other designations for these forms. Best of luck.

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    How long does a living will or trust last?
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    Kathy J. , Geriatric Care Manager answers:
    We tend to agree with Ron. It is always best to update your living will and/trust every 3-5 years. For local resources and contacts, please contact to speak with one of our client care managers.
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    Ron M. , Elder Law Attorney answers:
    Theoretically, a living trust or a will should be effective for the life of the person who made it. However, circumstances change, laws change, taxes change and what may have been right 5 years ago may not be the best course of action now. Therefore, it is important to have your estate planning documents reviewed by an estate planning attorney who is also familiar with government benefits available to the elderly to make sure that the plan still meets your needs.

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    My 92 year old grandma had her breast removed 10 yrs ago and has recovered great. But now one incision has gotten infected and she also broken two ribs. We called in Hospice to get my mom help with my grandma. Her vitals are good, She is eating well and knows what is going on. Why does Hospice act negative about her? Her organs are not shutting down. She was loopy from pain medication. Should we have stayed with home care who seemed more positive about her recovery? Hospice seems to be preparing her to die?
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    Laurel F. , Nurse and Care Manager answers:
    Hospice is focused on comfort and maintaining quality of life in the face of life-limiting illness, and home health care's focus is restorative/rehabilitation. If your grandmother's belief is that she no longer desires curative care, such as going into the hospital for intravenous antibiotics for her infection, and does not wish to participate in physical therapy for strengthening then hospice is an appropriate choice. Neither approach is wrong, its about what is the best fit for the client's needs and wishes at that point in time. It is not uncommon for people to improve and thrive with hospice, and often "graduate" from hospice and go back on home health care services, and then transition back to hospice when their condition declines. A professional geriatric care manager such as myself helps families with these difficult decisions and works with providers to ensure a good fit and satisfaction. Perhaps you could suggest to your mother to contact us for a telephone consultation, she can request this through our website.

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    My mom is dieing of heart failure and kidney disease. Her advance directive states that she has to be unconscious for 2 days before stopping all life sustaining treatment. Does this mean the doctor MUST perform cardiopulmonary resuscitation even though it will be very painful and only prolong her suffering?
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    Brian H. , Elder Law Attorney answers:
    While it is not clear the exact document that you are referring to as her advanced directive, if she does not want to receive CPR she should discuss with her physician A Do Not Resuscitate order (DNR). This is the document that would prevent the unwanted use of CPR. It is a doctor's order, so only a doctor could provide this document.
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    Leonard B. , Elder Law Attorney answers:
    This is very unusual language within an advanced directive. Please ask the charge nurse to arrange an "ethics consult" to help guide you in the care of your mother. The ethics committee can review the language of the document, her religious and personal beliefs, all aspects of her medical condition; and any legal restrictions to guide you through the decision making process.

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    My step mom is just entering the hospice phase now. She has been fighting pancratic cancer for a year. I have never had a problem talking with her, but I am fearful of saying the wrong thing I want her to know that I will take care of my father, her husband, when she is no longer with us. She just was given the news today that there is nothing more they can do for her I don't know if she is scared. We never discussed this phase of the illiness.
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    Deborah S. , Nurse and Care Manager answers:
    You can start the conversation by asking her the question " what are you thinking about the news you have received?" Then listen. The hospice service usually has a Chaplain who you can request to visit with the patient and family members. You can also tell her that you want to honor her wishes with regard to her care especially if she can't speak for herself and ask her to talk about what they may be.

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    A childhood friend of mine is in hospice. I don't know which facility it is in Loiusiana. Do you know of a facility near there? Can I call up and find out if he is there? Thanks.
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    Regan F. , Geriatric Care Manager answers:
    Please call me if I can help in any way.

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    Our brother-in-law has locked us out of seeing sister in hospice. Can he really stop us from seeing our sister in her last days of life? What can we do?
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    D. Rebecca M. , Elder Law Attorney answers:
    There is not enough information to say whether your brother-in-law can legally keep you from seeing your sister in hospice, but he may be able to effectively prevent visits unless you are willing and able to take legal action to enforce your sister's right to visit with you. If you want to take legal action, you should contact an experienced elder law attorney as soon as possible, since it can take weeks to obtain results through the courts even if your brother-in-laws actions are unjustified.
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    James S. , Elder Law Attorney answers:
    Speaking from strictly a legal point of view, it all depends on whether your sister still has capacity to make her own decisions. If she does, you might seek assistance from another family member or the social worker at the facility and have them talk to your sister to see if she wants to see you. If she does then perhaps the same person can arrange a visit. If she does not want to see you for any reason then you will not be able to see her. If she no longer has capacity, and assuming her husband is her power of attorney, then his decision controls. While you could file a guardianship action and argue that your visit was in your sister's best interest, it would be very expensive and very unlikely that you would win. Good Luck.
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    Noreen C. , Geriatric Care Manager answers:
    My first call would be to the hospice team, particularly the social worker or chaplain. They might be able to advocate for you. If nothing else, communicate your support to your sister. Not knowing specifics, I would suggest that emotions for all are raw and that you need to be patient until resolution. Focus energy on your sister and her needs, even if you cannot be there physically.

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    My father is 85. He has numerous and significant health issues. How can I understand his prognosis for the future? He collapsed at Christmas from a infection in his knee and then started sundowning. He is in a home now. Most of the time when he speaks, he makes no sense. He lost his short term memory two years ago, and he is progressively losing some past memories. He has forgotten 2 great grandchildren and 1 close grandchild. What stage would you consider him to be in?
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    Julie H. , Nurse and Care Manager answers:
    From a medical perspective your Father might be in need of a in-depth evaluation of what stage he is in. Is he on the right medications? How is the infection in his knee and the medications he is taking playing in part with his sundowning? What resources are available to educate everyone in the prognosis for the future? ACM Care can provide the services needed with our staff of Medical Case Managers. We can design a personalized program to improve the current situation. Give us a call to start the design of a personalized plan. Learn about us
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    M. H. , Elder Law Attorney answers:
    From a legal perspective your father might be in need of someone that can legally make decisions for him. If he has created powers of attorney appointing an attorney-in-fact to make decisions for him that is a great place to start. If he has not he may lack capacity to now sign such documents appointing a decision maker. In that case you may want to consider petitioning the probate court for a guardianship &/or conservatorship to assist him. This is a step that should not be made lightly. You would probably benefit from the advice of an attorney after review of all circumstances currently affecting your father and immediate family.

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    My elderly loved one is now on hospice. Once on hospice, how long can someone go without food or water?
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    Joel G. , Geriatric Care Manager answers:
    Please speak with your hospice nurse or social worker about the dying process. This is not an easy time and your needs are best addressed through your direct support system provided through hospice.
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    Alan M. , Geriatric Care Manager answers:
    Approx. 8 to 10 days in a hospice situation

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    I am wondering if hospice care is only provided at home or whether there are Hospice care homes in which an elder can live?
    Is there something that comes to mind in the Five Towns (Long Island area)?
    I ask because my grandma has Cancer of the liver and lung and my dad and his siblings have decided not to operate and just go the palliative route.
    Your help is appreciated. Thanks.
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    Joseph M. , Elder Law Attorney answers:
    Depending upon where your grandmother lives she may be eligible for hospice at Calvary Hospital.
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    Barbara P. , Geriatrician MD answers:
    Hospice care is also provided in nursing home. One good resource is MJHS(Metropolitan Jewish Health Systems) Hospice – they provide hospice care in the home, in the hospital and in nursing homes and in hospice residences in various facilities in Brooklyn Bronx , Queens, Manhattan and Nassau County Call 212 420 3370 or 1800 467 7423.
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    Sandra S. , Nurse and Care Manager answers:
    There are facilities which provides hospice care, if you do not want keep your loved ones at home.
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    David L. , Elder Law Attorney answers:
    Such a difficult but common situation. Hospice care can be provided at home, in a nursing home or in an inpatient setting. I suggest that the family caregiver contact a hospice care provider and ask that the grandma be evaluated for inpatient hospice eligibility. This would require her to have symptoms that cannot be managed in any other setting, like home. Most patients do not require this level of inpatient hospice care however, and really need personal care which can be provided at home by family, private hire aides or in a nursing home. Hospice Care Network is 516-832-7100. Some communities have a "residential hospice" where patients like this woman could live with hospice oversight and care. We do not have any in this geographic region sadly. I suspect the family will end up providing care at home with hospice. It should be noted that hospice does provide four hours a day of an aide, docs and nurses coming to the home, and delivery and coverage of all appropriate medications. Bereavement support is also provided by hospice.
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    Ellen M. , Elder Law Attorney answers:
    Residential hospice is provided in most nursing homes in Nassau. There are no stand alone long term hospice residences in Nassau. There are special In-Patient Units ("IPU") but these are short term ( two weeks) as they are the highest level of care and they are expensive. IPUs are fully covered by Medicare. Be aware there is a very strict criteria for IPU placement. In order to be eligible, a person must either be beginning the dying process or has acute symptoms that need to be managed before transferring home or elsewhere.
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    Mary Ellen S. , Geriatric Care Manager answers:
    Most hospice programs are associated with a facility where the patient can live while getting hospice care.
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    Rosario A. , Physical Therapist answers:
    There are nursing homes which provide hospice care as well. You can either get this particular type of service in the home, nursing home or homes specific to this. A good website would be HospiceCare.com
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    Sonya M. , Elder Law Attorney answers:
    Not sure about actual Hospice care homes. But hospice care, in general, can be provided in the person's own home.

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    How many months is the required expected survival for medicaid to pay for an elder's hospice care?
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    Diane P. , Nurse and Care Manager answers:
    Hospice is a benefit covered by Medicare, not Medicaid. A person is eligible if the primary physician states the patient has a poor prognosis with less than 6 months to live. Once accepted into Hospice, a nurse will recertify given the person continues to meet the hospice criteria. A person can be discharged from Hospice if his medical condition improves.
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    Rosemarie R. , Geriatric Care Manager answers:
    Medicare pays for hospice, not Medicaid. There is no time limit; however, if a patient's condition improves, then coverage may end. There is some flexibility.
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    Barbara P. , Geriatrician MD answers:
    To my knowledge, hospice is a medicare (not medicaid) benefit. Also, a doctor needs to certify that the patient's life expectancy is 6 months or less to qualify for this benefit.
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    Debra D. , Geriatric Care Manager answers:
    You mention the person is an elder, so that person most likely has Medicare. Therefore, Medicare is the primary source of payment of hospice care for the elderly. The person's physician has to certify that they expect a six month or less life expectancy.

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    How long of an expected survival must an elder have in order to be considered as someone who should receive hospice care?
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    Leslie B. , Elder Law Attorney answers:
    The rule used to be expected to die within 6 months but it is no longer that specific and is determined by Medicare and the providers.

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    As someone is approaching the last stages of their life and is receiving hospice care, will Medicaid pay for their Hospice Care?
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    Sue C. , Geriatric Care Manager answers:
    the following info is a short synopsis of FL Hospice/Medicaid. The Hospice Program - Provides Medicaid services for terminally ill persons. One may apply through a local Hospice. Financial eligibility is the same as the Institutional Care Program. Institutional Care Program helps people age 65+ or disabled and in nursing facilities pay for cost of their care plus provides general medical coverage. Must meet level-of-care as determined by the Department of Elder Affairs CARES Unit. There may be financial responsibility for the patient and eligibility may involve an Income Trust. Financial eligibility requirement as of January, 2012: Individual gross monthly income of $2,094 and asset limit = $2,000. Couple gross monthly income of $4,188 and asset limit = $3,000 if both persons are being deemed eligible. For ICP, when one person is going into a nursing home, then the community spouse is allowed to retain resources in excess of these amounts.
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    Shannon M. , Geriatric Care Manager answers:
    Typically, yes. Medicare has a hospice benefit and Medicaid programs also may cover hospice (the person may need to switch Medicaid programs as there are many different programs and the situation may warrant an update). Most medical insurances, from Medicare to commercial insurance, have hospice benefits and for those on other programs, you can check with your insurance or speak with the hospice directly. They should be fairly expert at determining your coverage and if you need help moving to a different Medicaid program, for example, your hospice social worker can typically help with paperwork. Many hospices are also non-profit and have donations which assist in covering non-insured patient care also.
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    Gerald C. , Elder Law Attorney answers:
    Medicaid only pays in those circumstances where the Hospice recipient is eligible for Medicaid benefits in the first place. However, it is possible that MEDICARE will pay.

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    My Mother has non-Hodgkins lymphoma and is failing fairly quickly. I need to find out info about hospice services for her.
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    Susan L E. , Geriatric Care Manager answers:
    Re: Finding a "good" hospice. The National Hospice and Palliative Care Organization has a member look-up directory. Go to NHPCO.org and on the left side, about 3 items down is "Find a provider". As with any membership directory, you want to look for signs of quality. Hospice's version is "Quality Partners" so in your initial search, you might look there. (These are hospices who agree to abide by some additional quality standards.) Something you might look for also are specialty programs (pediatrics, CHF, COPD). These usually indicate a stable staff and a strong enough standard program that they can start adding some niche programming. Other things to keep in mind: Non-profits tend to have more leeway than for profits to bend for individual patient needs, but not necessarily. Some of the long-established hospices can get set in their ways. Similarly, the for-profits have been given a bad name in the press (usually these are the large chains and/or hospices affiliated with skilled nursing facilities). The big chains (VITAS, Oddessy) vary significantly from one to another. There can be advantages, especially if you envision that someone may need to move. Hospital-based hospices have the advantage of continuity of records, and if the person is imminently dying as an inpatient, they often have a special set of rooms, or at least procedures, to accommodate families staying over night, etc Even though the Medicare benefit means that hospices all offer the same basic set of services, not all hospices are the same. How they implement their programs and the degree to which they are community-based often makes a huge difference.
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    Vincent R. , Elder Law Attorney answers:
    Please contact my law firm for a free hospice memo.
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    Barbara P. , Geriatrician MD answers:
    Please consider calling Metropolitan Jewish Health System Hospice and Palliative care. They do service Brooklyn.
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    Shana S. , Elder Law Attorney answers:
    Medicare provides coverage for hospice services. If your mother is in a hospital or facility, ask the medical professionals and/or social worker about hospice services. They can be provided in many facilities. If she is at home, you can ask the home health agency or a private hospice provider such as Care Alternatives.
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    Sandra B. , Elder Law Attorney answers:
    Where is your mother located? There are numerous facilities, assisted living places and nursing homes that have hospice areas.

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    I am somewhat interested in going through the process, with my father, of completing a Do-Not-Rescuscitate (DNR) for my father. I see the value of the form as preserving his dignity from crazy CPR when he has already passed on. I am concerned, however, about him having a DNR because in googling the topic, I have come across articles linking a DNR with less agressive treatment during the term of his medical care, even prior to 'the end', prior to rescuscitation. One article I saw associated having a DNR with physicians being "less aggressive with DNR patients and were less likely to transfuse, transfer their patients to the ICU, order diagnostics tests, intubate, and utilize aggressive critical-care monitoring and procedures." Is there a physician or nurse out there that can advise me about what I should do? How can I protect my father from unecessary medical treatment while at the same time making sure he gets the best treatment possible?
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    Steven B. , Geriatric Care Manager answers:
    Great question. I would suggest using a DNR as one 'advanced directive' along with another document. A Living Will is one type of document in which the senior articulates his desires to his medical providers. Having these two documents should clarify exactly what you are looking for. Another advanced directive to consider would be 5 Wishes. One last thought would be to set up a meeting with an elder law or estate planning attorney to customize an advance directive document to best meet your needs.
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    Paul R. , Geriatrician MD answers:
    There is, sadly, a kernel of truth to the concerns below. Health care workers can misinterpret DNR to mean do not treat. However, one can protect against this by having a broader discussion with your doctor about goals of care, keeping in mind that these can change daily, depending on the clinical situation. Often doctors do not initiate these conversations,in which case the patient and caregiver should. In fact, the new Palliative Care Information ACT requires doctors and nurse practioners to offer information and counselling about palliative care to patients with advanced life limiting illnesses. A POLST or a MOLST, is now also a legal document in NY, and essentially serves as a physician's order sheet that needs to be respected in all settings ( hospital, home, nursing home, ambulance etc). It can also serve as a useful guideline to discussing and determining goals of care including intubation, pain medicine, hospitalization, transfusions, antibiotics, feeding tubes etc.

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    What are signs that my parent in my care is dying? My Mom is 98 and sleeps alot. She is also very weak. Are those signs?
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    Cheryl A A. , Nurse and Care Manager answers:
    Your mother may not be "dying" per se, but she may be failing. Not knowing any of her medical history, medications, level of activity does not allow me to truly provide much of a clinical response. Given her age, slowing down, sleeping more is not really unexpected. She does need to be evaluated by a physician/nurse practitioner and they can best answer this question for you. My questions back to you are: if she is failing, what kind of preparations have been made, who has been designated medical power of attorney and would you consider hospice care for the superb level of support that they can provide.

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