 UBBFriend: Email This Page to Someone! |
 On Our Own Terms: General Discussion [all categories]
 The Issues
 Hospice and Palliative Care (Page 1)
|
| This topic is 2 pages long: 1 2 | next newest topic | next oldest topic |
| Author | Topic: Hospice and Palliative Care |
|
moscow_maud New Member Posts: 3 |
posted 07-31-2000 07:23 PM
  
What are the benefits of hospice and palliative care? What have been your own experiences with this form of care? |
|
maryb Member Posts: 3 |
posted 09-10-2000 11:16 PM
When my brother came to us last year with the news that he was ill we tried to gut it out...we figured we would just dig in and defeat his monster together. We always did in the past - no matter what came along. At first he didnt even want to hear the word Hospice. It was sinonomus with death to him. As time went on we battled away but ultimately were no match for Mesothelioma - we felt like we were drowning. I contacted the Northern Virginia Hospice people and they threw us a lifeline. THey were so wonderful. They made it possible for my brother and I to face the reality of his death, enjoy the rest of his life and have a peaceful, loving passing. Without them I dont know what we would have done. They are angles. |
|
memories2 New Member Posts: 1 |
posted 09-11-2000 12:44 AM
quote: My brother, who died in Dec. 1999 from complications of lung cancer, chose hospice and pallative care rather than prolonging his life with chemotherapy. We were told by the hospice coordinator that, as was told to the the doctor in the series that aired tonight, my brother's insurance policy only covered up to $5,000.00 for hospice care. Is this true of most major medical insurance policies? We were told to use major medical rather than the hospice part of the policy for nurses visits as long as it was possible. My feelings about hospice care were colored by this suggestion in that I do not feel it was very helpful for me or my brother in his pain management and in the end when he was dying.. I feel his last days could have been handled very differently if we had not been hampered by the thought of only having this small amount of insurance coverage. Please would others post an opinion on insurance hospice coverage. |
|
Mikekennedy New Member Posts: 1 |
posted 09-11-2000 02:09 AM
Hi everyone ! My name is Mike. I'm a Nurse in Cincinnati, Ohio. I currently work in a wounderful Hospice here in Cincinnati. I have been a Nurse who has been around the medical "block" so to speek and I've just recently begun to do Hospice work...and I love it !!! Unfortunately, I would encourage everyone to look into the kind of insurance coverage provided by your insurer. As stated in the Bill Moyer's piece tonight, many people will be very discouraged and outraged to find out just how little "importance" is placed on End-Of-Life-Care provided by your insurance companies. Much must be done in the neer future to sell our insurence providers on the need for Hospice care. (Good)Hospices will provide wonderful palliative care to our loved ones as the end of life nears. Good Hospices must be found. Not all institutions calling themselves Hospices are where you want your loved one to spend the last days of their lives. But! Good ones exist...Hospice of Cincinnati is one of the good ones !! Insurance companies must be made aware America's medical community will not be able to cure everyone! It's cheaper to pay for palliative care in a good Hospice and let the person die with dignity than to spend millions of dollars to fruitlessly extend the suffering of the terminally ill. The "science and practice" of Hospice is still a relatively new concept in the U. S. Hopefully, bad Hospices will fall by the way-side (as they should) and Good ones will grow and prosper. These developments must occure with everyone's involvment, from the grieving family member to the corporate executive. Insurance companies must be made to listen...especially with us Baby-Boomers getting older. American medicine has not been tought how to provide quality compassionate end-of-life care and "let go" at the same time! As a nurse, I am so glad (after sixteen years of nursing) to finally begin working in a Good Hospice!! In several months of working there I've already been at the bedside of many who have gone to Heaven after having been compassionately cared for by people who care, in a place that feels like home. It's a real eye-opener to go to work knowing all the patients in this building are not expected to get well, and, all will eventually die. It's wonderful not to have to worry about causing more suffering just because some doctor say's so... It's comforting for me to know I am able to concentrate on making the patient and the family comfortable. It's refreshing to know we're all working toward the same goal. A peaceful,loving death-with-dignity is often the best we can hope for. I look forward to comming back to these boards to read more of what you-all have to say...maybe in a small way I can help to make a difference in someone's life. Mike [This message has been edited by Mikekennedy (edited 09-11-2000).] |
|
HMsangel3 New Member Posts: 1 |
posted 09-11-2000 03:22 AM
Hospice guided us through my father's latter walk to his passing, Nov.97. He died at home with us, a gift for him. Some of his greatest fears were to die painfully "I see a monster down the long hallway" where later down the 22 month long road we walked to his last breaths he told of it "just being a pussy cat now" My father was allowed to stay at home and get a needed catheter (sp?) put in when his feet were starting to swell, get hard and felt cold to the touch. That was 2 days before his passing, and i believe now a sign to look for in how close. We were able to obtain an order and delivery of a suction machine with Hospice as there was a type of foam starting to build in his mouth. One of my father's long time fears was to eat up all he had saved for us with a disease. He was terminal from the diagnosis. Another gift for him i feel now. So, Doctor Office Visits were his only outside trips for his care. No Hospitals. Our nurse Dana is still a delight to our family. Hospice allowed us to care for him right where he had worked so hard to be. in the home he built, on the river he loved with his family around him and someone humming Happy Trails to You, and another...I'm so Glad we had this time together. His "Death Peace", for lack of a better phrase, was a type of phenomena, something felt, experienced, assimilated and still abides with me to this day. Thank you Hospice. Hal's Daughter |
|
Laurie Member Posts: 2 |
posted 09-11-2000 09:53 AM
We didn't have a very good experience with the hospice care for my father. The nurse would stand in the kitchen when we were trying to get my father on the toilet in the living room, because he couldn't talk, and she would scream from the kitchen that we weren't lifting him right instead of coming in and showing us the proper procedure. She helped maybe once give my father his sedatives by suppository, that was our job! She told us that we needed to tell him that it was okay to let go and we knew that we would have to do that, as hard as it was. That day, the day before his passing, she whispered in his ear that it was okay. THAT WAS OUR JOB NOT HERS. The hardest part to think of was when he did pass away, he was home with us, and we had to call hospice to pronounce him dead. THE NURSE ON CALL MADE US CHANGE HIS CLOTHES BEFORE THE FUNERAL HOME PICKED HIM UP!!! Like that moment wasn't hard enough, but we had to take my dad, who was dead, and turn him over so that we could change him. That memory hurts the most. My father passed away in January and we have yet to hear from ANYONE at hospice. When we asked another hospice how often they keep in contact with the family after the death, we were informed about 13 months. NOTHING! WE HAVE NOT HEARD FROM THEM AT ALL. I have heard so many good things about hospice care that it hurts to know that I have such ill feelings towards that one that we used, not all of them. |
|
JAEngblom New Member Posts: 1 |
posted 09-11-2000 05:56 PM
I was the Executive Director for a local hospice from it's inception in 1980 to my leaving in 1999. One of the guiding principles of all hospices was that no one would ever be denied services because of an inability to pay. Nor because their insurance did not cover hospice care. Hospices do extensive and successful fundraising based on thier stated willingness to care for the dying and those in grief. The patient, Bill, broke my heart in last night's episode of Bill Moyer's special. He and his wife assumed that the insurance policy proviso was the final word on when they could be admitted to hospice for the support and expertise they needed. I encourage everyone to contact hospice directly if ever the need arises in your family or for your friends. Let the hospice fight with the insurance company because you have more important issues to face with your loved ones. If the hospice refuses to admit the patient because of lack of insurance coverage or because of limited coverage call the Department of Public Health in your State or call the Health Care Financing Administration to report your dissatisfaction. The hospice may be in violation of state or federal regulations. Make sure you express your unhappiness to the CEO of the HMO, PPO or insurance company who gives you a hard time. And, it didn't take long for some hospices to play corporate games with comfort and patient-centered care. You must now shop for the best hospices, interview them and expect top notch pain control and educated, skilled caregivers. Utilize the full team (social workers, spritual and counseling services, volunteers, medical experts and explore other therapies such as music/art/relaxation/massage) not just the nurses as wonderful as they can be. Hospice is at it's best when a rapport can be built over a period of time, when friendships and trust can be established. But even when time is very short, hospice can still be of help. I wish you peace and the grace of good companions on your path. |
|
Julie Ingram Member Posts: 4 |
posted 09-11-2000 06:34 PM
quote: |
|
Julie Ingram Member Posts: 4 |
posted 09-11-2000 06:42 PM
My mother died February 25, 2000. I arrived in her home on February 2, 2000 to help with taking care of her. Hospice of the North Shore in Massachusetts had already been called in and I came to help my sisters care for our mother. I can't say enough about Hospice. They arranged for all of the hospital equipment, kept careful track of Mom's medications and made sure new prescriptions were called in on a timely manner. Their main concern was for Mom and keepong her free of pain. Their next concern was for myself and my sisters and they provided counseling for us to help us at this time. Mom had her glass of wine, had her first massage, and listened to Ricky Martin's Living La Vida Loca. It was probably the best month I have spent with my mother in a very long time. It was the best gift I have ever given my Mother in helping her die the way that she wanted and it was the best gift my mother gave to me, to be there when she needed me.
quote: |
|
winfield32 Member Posts: 2 |
posted 09-11-2000 07:12 PM
For the last 35 years, I have worked in a hospital and had to deal with the deaths of patients, oftentimes alone, with no family members near. About 10 years ago, for the first time, I was fortunate to experience the death of a friend in a hospice situation. Although he lived 2 houses up the block from us, I wore a path in our next door neighbor's yard over his last 11 days at home. To have experienced the families open door policy for me, the soft music always playing in the background, the smile and deep gratefulness of Bill upon my coming and going on a daily basis, his wife's strong spirit as she participated in the loss of her beloved husband, is hard to put into words. The hospice workers were wonderful, always taking extra time to explain everything about his care to his elderly wife. She was even given instruction as to regulating his IV pain medication, with the assurance she could not over-medicate him. Although I was not present at his death, this experience showed me how wonderful death can be in a hospice situation at home, surrounded by the love and compassion of family and friends. |
|
buzzlightfoot New Member Posts: 1 |
posted 09-11-2000 07:17 PM
I helped my father through the last three months of his life. He had renal cell carcinom, kidney cancer. I cought early enough and the kidney is removed that there is a 40% chance of servival. If not, and the cancer metastacised then the chances are slim to none. There just is no effective treatment at this time for this cancer. Dad started interferon treatments which has a 7 - 12 % chance of having any effect on the cancer and of those that make that percentage there is only a 5% chance of remission. Dad was on the treatment for two weeks and it had devitalized him to the point of hospitalization. Whinle in the hospital we contracted with the local hospice for help. I am pleased to say it was the best thing for my father and for my step-mom and I. The helped us get all the equiptment put in and managed all his medical needs. Anything he needed usually arived within 24 hours. As far as nurses go, I was not pleased with his first nurse. I had run out to the pharmacy, dad ws still mobile and coherent then but I did not realize that he was in a little denile as to his abilities. While I was gone the nurse called and said she ws comming over. Dad should have told her to wait until I was back but he didn't. After letting her in he fell walking ack to his chair in the den. When I got there the nurse, a rather small lady, was staring at dad not knowing how to get him up. At that time dad was still over 200 pounds. I got him up. I felt like the nurse was afraid I would blame her for his falling. I didn't but I felt she was too helpless in the face of getting him up. I worry about hurting peoples feelings but decided that I was the consumer and was intitled to the best that I could get so I called hospice and requested a new nurse. They said that was fine and was done often enough. It really is important that you feel at least the ability to communicate if not connect with the people that are providing care to your loved one. We liked the new nurse but then there was a reorganization of the territory and we were assigned a third nurse. Se wa also good and was with us until the end. Dad had sever problems that required the oncall weekend nurse to come to the house. His name was Kevin and he was an absolute angle. My step-mom kept wishing there was a way to clone him. I requested the social worker come out to talk to me as well, and we had an aid come to bath dad three times a weel. We would have done that for him but for his own reasons he was more comfortable having someone else help him. I would say that my hospice experience was a very good one. Everyone we delt with were professional and kind, especially those that came to the house. I know that each hospice organization is different and I know that the one we worked with was exceptional. They even have an inhouse care facility for critical care that although I never saw it it was described as individual rooms with private balconies overlooking a courtyard as well as facilities for families. It is never easy loosing a loved one but Hospice really made a difference. |
|
kahunakim New Member Posts: 1 |
posted 09-11-2000 08:53 PM
Having had the opportunity to become acquainted with hospice care, given the my mother's sudden illness with liver cancer and her death six weeks ago, I can honestly say that it made a great deal of difference in how I'm handling my grief now. My mother was born at home, which was typical at the time, to a family who eagerly awaited her arrival. Thanks to hospice, she died at home with a family who appreciated and loved her. A fine bookend to an exceptional life. |
|
Inez Member Posts: 3 |
posted 09-11-2000 11:01 PM
quote: My mother died in February 1996. If it weren't for Hospice, I would have gone along with her. She wanted to die at home and we attempted to provide her with her last wish. Unfortunatly, she had bone cancer and broke her leg. We had to take her to the hospital where the doctors were not equiped to handle pain management. She had a DNR but we had to fight to honor it. The hospital was a NIGHTMARE. Hospice nurses were the ones who initially gave her medication to calm her down and subdue the pain six hours after she broke her leg. I am forever grateful for Hospice. I hope the doctors of this world will soon adjust to the fact that in time, this life is meant to end. Please, please, please help those who are ready to die, die with as little pain and as much dignity as possible. |
|
sanpep New Member Posts: 1 |
posted 09-11-2000 11:03 PM
My mom is dyeing. She has metastatic lung/ brain cancer which now spread to the renal glands. I care for my mom in the evenings and on the weekends. I work full time, have a 10 yr old child and a somewhat understanding husband. I know in my heart I am trying my best to make my mother as comfortable as possible. She is in her home, my dad is with her 24/7 and hospice comes 1 a week. My heart is breaking because everyday I ask God to take my mother because I hate seeing her wilt away. I dont know how much longer Mom will be with us because some days she looks so good, then other days are heart wrenching. Please help me. I am being selfish is asking God to take her and I dont know what to do anymore. Please help me understand these awful feelings. |
|
Milanprima Member Posts: 3 |
posted 09-11-2000 11:14 PM
[ Please would others post an opinion on insurance hospice coverage.[/B][/QUOTE] Understated! When I learned that Hospice puts a time limit on the care they give, I was horrified. Imagine trying to develop an intimate relationship with a dying person only to tell them "so long" when they manage to outlive the time you've given them in which to die. As a clinical psychologist I never referred anyone to Hospice after I had that experience (finding out they pulled out before the patient died). So sorry you had to go through that! |
|
amcleod New Member Posts: 1 |
posted 09-11-2000 11:41 PM
quote: My father died of throat cancer last summer. I live in a different state from that in which he died and I grew up. I visited with him a couple months before his death. He was in pain but still able to get up and around. A couple days before his death, my sister called me and told me that he had taken a turn for the worse. I left for my home state immediately and was with my father during his last day. My sister deserves much credit, for she actually relocated from her out of state home to care for my father in his last three years of life. What I'd like to say here though is that when I arrived at my father's home, as late as I arrived, I immediately, right off of the road relieved my sister. We didn't know that Daddy would be gone in a day, but the point was she needed someone to carry some of the weight. I was willing but quite ignorant of what to do in terms of care, things that she had learned over three years, specific things to do in the last days and months. Needless to say, I felt afraid. I wanted to do a good job. A good job was crucial because this was our father and I simply wanted to do what was best for him. As I sat alone with my father the day before he died, I had to administer pain medication via his mouth, placing it under his tongue, something that he fought with the little life that he had left in him. All I could think about was that this man who had taught me how to live, the difference between right and wrong, what to do in various situations, how to stay alive, I was force feeding pain medication. I thought many times about not doing it because I thought that it was speeding his death. My sister assured me however that death was imminent and that the pain medication only made him comfortable. Daddy had a feeding tube, and he had been taking Ensure via the tube for the whole three years, which we all thought was pretty miraculous. His last day I fed him through the tube and on his last day most of the Ensure was regurgitated through his mouth. It was tinged with blood and mucous. As I watched those fluids fly across the room, I began to wonder how on earth Hospice expected completely untrained people to administer care for someone so far along. The grief itself was enough. Now, I actually felt that because of what might be my own negligent care I might somehow be contributing to his demise. Maybe this is irrational thinking, but those were the thoughts going through my mind. I called the Hospice nurse for help and was basically told that the regurgitation was normal even when blood mixed. Finally, about an hour before Daddy passed, my sister called the nurse again to get help cleaning Daddy's trach tube. The nurse came for the first time that day. She tugged at the tube. Daddy regurgitated again, took his last breath, and passed on. As a family, we have all said that we were glad that Daddy died at home because we know that he hated hospitals, loved his family, and loved his home. Because of Hospice, we were able to be with him on his final day, and there seems to be something awfully right about that. However, when families--children and spouses of the dying--must administer medications via the mouth and under the tongue to a resistant loved one, this, combined with the grief of watching him or her dying, it is too much. |
|
Inez Member Posts: 3 |
posted 09-12-2000 12:58 AM
quote: Dear sanpep; |
|
Stamm44 Moderator Posts: 63 |
posted 09-12-2000 01:00 AM
Many thanks for the advice from someone who has seen Hospice, insurance companies, and health care providers in action. |
|
charles morrill New Member Posts: 1 |
posted 09-12-2000 11:56 PM
Once I was a hospice volunteer in Charlottesville, Virginia. There were the usual pleasant interactions with families who needed someone to be around so they could get out of the house. It seemed easy, almost superficial, but I guess it helped some... And then I met someone I'll call Steve, with two young kids, a young wife, and AIDS. He didn't have any money, much less than just about everyone portrayed on the show so far. But, he let me into his life and I loved him. The one thing Steve did have, however, was a young doctor by the name of Carlos Gomez, and that made all the difference. Even today here in Charlottesville, he remains one of just three or four doctors who make sure their patients have enough pain medication. Steve had a beautiful death at home with his family around, and was both lucid and pain free at the very end. In his final weeks we had worked on a video tape together so his pre-school children would later be able to know something of the wonderful man who loved them. I miss him. It was great to see Carlos on the show tonight. My only concern is that viewers might get the impression that Dr. Gomez simply puts all terminal patients to sleep near the end. This is not the case, patients simply get what they need to remain as pain free as possible. I do not favor physician assisted suicide. I only ask that doctors seriously treat the pain of a terminal illness and respect patients who don't want feeding tubes or ventilators. I think when you treat the pain well, you save a life, even as it ends. Thanks, Carlos. Steve always wanted me to say thanks and I always will. charles morrill |
|
nursenine New Member Posts: 1 |
posted 09-13-2000 02:23 AM
quote: |
|
Earlyorphan Member Posts: 3 |
posted 09-13-2000 03:21 PM
I lost both of my parents to cancer within a six month period a few years ago. I was able to keep them both at home to die, which was a great blessing. Without in-home Hospice help, I think I would have lost not only my parents but probably my mind during that intense and challenging stretch of time. Both of my parents had hospital stays just prior to coming home to die and my experience was that doctors and nurses within a hospital setting view the world - and their patients - through a value system that demands they use their medical knowledge and skills to "do something", to exert mastery over disease, to conquer symptoms. When there is nothing left to be done, and no way to mask the dying process, hospital staff are "done" with the patient. I think it is chilling and lonely to be a dying person in most hospitals - you become a reminder of the ultimate impotence of medical knowledge. But Hospice staff, explaining that their mission is neither to prolong life or hasten death, are just beginning their work when there seems nothing left to "be done". Because they understand that there is so very much to be done in that awful land the patient and family must travel to in the space between life and death. If hospice helps even a litte in easing this journey, they have succeeded. First, there is help for pain, and for the fear of pain, that so often seems overwhelming. They have deep wisdom about coping with both fear and pain - something medical staff in efficient hospital settings often don't have. They understand the dying process is about a circle of people - not just the patient but all who are attached to the circle around the patient. They work to help the circle help the patient in the final stage of life - bringing more support to the end of life than is usual. They know things about living and dying that aren't taught in medical school and aren't witnessed by most doctors - and this knowledge brings enormous comfort. Both my parents were so grateful for what hospice brought to their lives, and to their family - such a very different death than they had feared. I am always surprised and saddened that the response most people have to the suggestion of hospice help is angry refusal "No! We aren't giving up on our loved one!" Having had a near death experience in my youth, I understand how terribly lonely the place between life and death is when our loved ones refuse to budge from the solid ground of the fully alive and think that demanding we stay there with them is being loving. When I was dying in a hospital, my family and friends and all the doctors and nurses began to distance themselves from me when it became "known" that I was to die. Their actions and words were beyond reproach, but at a most fundamental level they moved away. The only true human connection I had each day was with the housekeeper, who was too lowly to be told I was dying and so who was the only one who still treated me as alive. The people of hospice are incredibly rare creatures because they have lived with the dying enough to stay with them as they move into the space between life and death - they don't display the distance that is such a completely normal (and terribly painful for the dying) response to the end stage of life. If they did nothing else at all, that alone would make it worth it to turn to hospice care. |
|
beverly bunton Member Posts: 6 |
posted 09-13-2000 05:37 PM
You need no one's permission to feel whatever you feel. Having lived thru hospice care for my sister, who was only 50 when she died, I must say that the hospice people helped my sister so much with the physical, but mostly the emotional aspects of living with dying. They helped her to take into consideration her comfort and not be so worried about hubby's concerns, or concern about the people who love her. When she finally came to peace with acceptance of her death, her last month on this earth was peaceful and spiritual and when her last breath was drawn, I, my brother and her husband were at her bedside with her unfinished latest Stephen King novel at her bedside, her beautiful view of the pond outside her windows and a feeling of harmony and peace with the hospice nurse and social worker close by. We had always been a closed family with little trust of strangers but these holy strangers knocked, we let them in, and when we did so, they brought their gifts of love and compassion and peace with them. I would not have missed the experience for all the world, especially in light of the fact that a year later my husband died in a hospital with tubes in every orifice, with brain death and no doctor would talk about disconnection of life support. I was thankful when he died, even wtih the ventilator going, because he had spoken many times of not wanting medical intervention. Now, I know why. If i have anything to say about it, no family member of mine will ever die in a hospital. It is barbaric and most physicians, with few exceptions, don't deal with death well and leave it up to nurses, thank God, to help the family have the knowledge they need to make difficult decisions. Please do not feel badly that you are hoping it will be soon. Get some help thru hospice for yourself and your loved one. They can help you, and they truly have seen it all. May the fates be kind. |
|
imyself Member Posts: 3 |
posted 09-13-2000 11:15 PM
quote: First, let me say I am sorry that your mother is dying. I lost my mother 4 years ago this July. Breast cancer that spread to her brain, which resulted in 4 tumors, giving her 6 months to live. I understand what you are feeling. I only recently admitted to my siblings, having the same types of feelings you are expressing. I too, felt selfish, even guilty, for letting that thought (let my mom die) even cross my mind. I now understand that it is natural. You do not want to watch your mother suffer, wither away. As much as it hurts to see them go, you reach a point where it just seems death is better. No more suffering for them, you can grieve because they are gone, and quite honestly I felt relief personally when Mom passed away, because I knew her well enough to know she wouldn't have wanted to go on very long in the condition she was in, but also because I was exhausted and emotionally wrecked, having taken on the role as one of her major caregivers. Let me say this, no matter what thoughts you have, or feelings you experience, none of them are "wrong" or "awful". And during such a time as this, my advice would be...remember all the good times, on her good days, take a second to store a piece of conversation or mental picture. On bad days, know you will get through it, and you are doing your best. My thoughts are with you and your family, sincerely. |
|
chloe unregistered Posts: 3 |
posted 09-13-2000 11:16 PM
I believe that the problems that can occur now with hospice have not been addressed in this series. I have had two very different experiences with hospice care, in 1992 when my sisters died at ages 35 and 45 of complications from a stroke and multiple sclerosis combined with cancer, and in 1998 when my parents died five weeks apart of liver failure and brain cancer. The hospice care that supported us through 1992 was exactly what was portrayed in this series -- loving, supportive -- it allowed us to make a peaceful death, especially for my sister with cancer. I learned so much from the wonderful people who helped us through a heartbreaking time. I turned in 1998 to the same hospice program which was affiliated with a religious hospital, but they had gone out of business because they could not compete financially with the hospice program in the nearby public hospital. I turned to that program and found that the hospice social workers were more focused on managed care than palliative care. They put their major effort into limiting the amount of care, constantly delaying, until my father was dead. For example, even though my father was within weeks of death when he went into hospice with brain cancer, they insisted that a nurses aide could not come more than three days a week, even though he was entitled to five days a week. We paid for the additional days out of pocket. It made a great difference to my father's comfort and allowed me time for a shower and a little bit of sleep or quiet time to process all the insurance forms. They never approved a home health worker to visit at night so that I could get some sleep. They never arranged for the speech therapy or volunteer visits they promised. I had to call repeatedly to get an air mattress and other basic items for his care. If I asked the nurse, I was told to speak to the social worker, who would tell me that I needed an order from the nurse, who would tell me. . . Despite my objections, the hospice nurse told my father he no longer needed to take an anti-seizure medicine if he didn't want to. He was in total control of his dying and didn't have to take any medicines if he didn't wanted to. So I was left alone in the middle of the night when my father went into seizures. I called hospice, they told me to take the emergency kit out of the refrigerator and follow the instructions. No nurse ever came to help me. My father desperately wanted to die at home. It took every ounce of strength I had not to call an ambulance during that very frightening experience. He died three days later. Had he gone into the hospital when the seizures occurred, he would not have been able to die at home. But it was a horrible, horrible experience for me that did not need to occur. When my father died, I was with him, alone. I called hospice and the funeral home. The hospice nurse arrived first, filled out the paperwork, drummed her fingers on the dining room table, looked at her watch, and sat with her head in her hands looking irritated as we waited for the funeral home staff to arrive. It was late at night and she was tired. I understood that, I was tired too. I told her to leave, I would be fine. I preferred to be alone with my father, thinking loving thoughts, than with someone who was annoyed to be there. This again, was so different than my earlier experience. There is good hospice care out there. But the managed care mind-set is also taking over hospice care in some areas. And families need to be prepared to FIGHT with the hospice staff for what they need in those cases. They need to realize that they may be largely on their own. My father was covered by Medicare and had a good supplemental coverage program. These were not coverage issues. But I could not even get them to approve the benefits that were usual and customary for hospice care. I am sure that my father's case helped their bottom line a great deal. I do believe in palliative care and dignity at time of death. I have carried out that belief in caring for my family members. I believe in the hospice movement. But families need to be cautioned that not all hospice programs are as wonderful as the ones Bill Moyers has portrayed. |
|
KathieRN New Member Posts: 1 |
posted 09-14-2000 12:09 AM
To clarify...It is not the hospice that sets the limits for the length of time a person can be on hopsice. Medicare payment is based on a 6 months life expectancy and many insurance companies set their limits on the rules set by medicare. The hospice is required to show that the patient continues to have a 6 month life expectancy and there are guidelines that must be met and documented to support the continuation of hospice. I think you are blaming the wrong people, as discussed in the Moyer's show, with the support of the hospice team of nurses, social workers, and with the proper medications and care, many people do improve and are no longer eligible for Medicare coverage of hospice...we don't like it, but we need to follow the rules set by Medicare. A few months ago, a hospice in Washington (I believe) was shut down and heavily fined by Medicare for keeping patients on service when they no longer met the guidelines. A closed hospice can't do anyone any good. The people to be mad at are your elected officials who make up the Medicare guidelines for coverage. quote: Understated! When I learned that Hospice puts a time limit on the care they give, I was horrified. Imagine trying to develop an intimate relationship with a dying person only to tell them "so long" when they manage to outlive the time you've given them in which to die. As a clinical psychologist I never referred anyone to Hospice after I had that experience (finding out they pulled out before the patient died). So sorry you had to go through that![/B][/QUOTE] |
| This topic is 2 pages long: 1 2 All times are ET (US) | next newest topic | next oldest topic |
  |
|
Technical Problems? | Thirteen/WNET
Powered by: Ultimate Bulletin Board, Version 5.42a
© Infopop Corporation (formerly Madrona Park, Inc.), 1998 - 1999.