• Hospice care for last 6 months of life

    Asked by Ncbb on Tuesday, May 15, 2012

    Hospice care for last 6 months of life

    We have stopped all treatments on stage 4 lung cancer and have moved on to pain management with a prognosis of 6-9 months to live. We have a tube to drain the lungs every two days just installed today. She has decided she wants to die at home, not in a hospital, and has a no feed, no artificial lung function, etc in effect. My question: Is "medicare covered" hospice a good thing for us? She's not happy about the idea of no "preventative cancer care" being covered once we go "on" the hospice plan. I am POA and not sure which way I should go. I think Hospice care will benefit us all, but she's feeling deserted by her Doctor and any hope if we go on the Hospice plan. I KNOW others have had to weigh this decision and I really would appreciate your feedback on this.

    20 Answers from the Community

    20 answers
    • GregP_WN's Avatar
      GregP_WN

      My mother and father both went through this a couple years ago, we took care of both of them at home in hospice. I didn't like the idea at first either, but the fact is, if it's past a certain point, and treatments won't do any good. Which is better, to have the treatments and deal with the added pain, discomfort and nasea caused by the treatments, or enjoy the last time you have as best as can. We chose the latter. Dad was told 2 weeks to 2 months he had, he made it 3 weeks. Mom was told 6 months with or without treatment, she made it 8 months. It was a hard thing to do, but I am glad we were able to be there for her and make things as easy as we could. The nurses from Hospice are in constant contact with their attending Dr. If she needs anything to make her compfortable, or needs medical attention, she will get it, just not "life prolonging treatment" specifically for the cancer. If she gets the flu, and needs something, they will treat that. Or if she has a nausea problem from something making her sick, they will treat her. It's hard to do, but I would do it again, no doubt.
      Good Luck in your care for her, you will one day be glad you were there to do this for her.

      about 5 years ago
    • Blue's Avatar
      Blue

      With Hospice's help I cared for my mother during her last two months. She had colon cancer. Those are two months I wouldn't trade for anything. And Hospice care was the perfect way to ease her through her transition. They provided palliative meds as needed, including morphine. She passed gently in my arms.

      about 5 years ago
    • spunkie76's Avatar
      spunkie76

      My mother was on Hospice through Medicare about 12 yrs ago. She was diagnosed Stage 4 Lung Cancer and she tried Chemo, but it made her so sick and weak. She was in and out of the hospital so many times that she decided this was not the way she wanted to spend her last days. She was only on Hospice for about 6 weeks or so, but it was a wonderful experience. They were there for me, to help me better understand what to expect, and they answered all my questions compassionately and in terms I could understand. They were able to manage her pain and keep her confortable. I was glad we made the decision for in home hospice and still am to this day.

      about 5 years ago
    • Ncbb's Avatar
      Ncbb

      Thank you all. That's exactly what I needed to hear. We signed her up today and bring her home tomorrow. Her liver is already failing and today we found out her stomach is not really processing food well ~ she had not eaten before the procedure for almost 20 hours but still had her last meal in her stomach. I'm thinking hospice will be good for all of us and after reading her your answers, she agreed that maybe it was a good idea if she really wanted to be at home for however long she has left. Thank you all again. As her cousin and POA, I'm finding it increasingly harder day by day to try to make the best decisions not only for her but for everyone involved. This forum and all of you make it a little easier to feel more informed and better with the decisions I am making. Thank you all again <3

      about 5 years ago
    • Button's Avatar
      Button

      I am glad you were able to feel comfortable with your decision. My mom's cancer had spread from the lungs to her brain and outpaced any gamma ray attempts. That is when we brought her home. In comparision to the hospital, nursing home options... it really is the best place to find peace. The support from Hospice was amazing for my dad, in addition to the great care they gave my mom. Enjoy every moment you are given, they are precious gifts.

      about 5 years ago
    • shauna0915's Avatar
      shauna0915

      I just went through this last year with my 62 year old father. He had stage 4 adenocarcinoma with brain mets. He was diagnosed April 4th last year, tried chemo and only made it through 2 rounds before he called it quits because it made him so sick and he started having seizures. His initial prognosis was 6 months to a year...if the chemo slowed it down. It didn't. After the 3rd trip to the hospital, it was decided to bring him home on hospice care. He had Medicare. Once hospice kicked in, they provided EVERYTHING he needed to be taken care of at home and also picked up and paid for all but 3 or 4 of his meds (he had 11 or 12 total). He wanted no tubes at all, so we agreed to sign a DNRCC, which is Do Not Resuscitate/Comfort Care only. That means there will be no life saving measures if he coded (heart stopped, breathing stopped, etc.). They would only give him meds to keep him comfortable until he passed...which was liquid morphine.

      Just because they are on hospice care does not mean the doctor will stop other care, preventative or otherwise, unless you've agreed to that. 4 days before my dad passed away, his stomach bloated and he couldn't eat or drink without being in extreme pain. The doctor had us take him to the ER to make sure it wasn't something unrelated to the cancer. It ended up that the cancer had spread, but my point is that the doctor still wanted him checked to make sure there wasn't something else going on. The point of it is to make their last days, weeks or months as comfortable as possible and if there is another condition unrelated to the cancer that can be treated, they should treat it.

      My dad ended up passing away on July 4th, at home, where he wanted to be, with me and my step-mom at his side.

      Take FULL advantage of anything and everything hospice offers. Read the "stages of death" that they give you (if they haven't given it to you, ask for it). Make anyone that is a caregiver read it so they know what to expect. If you have questions, hospice should be available to you 24/7. Get to know the nurses and aids that come to the house. They can be the most comforting when you need it the most. Remember...hospice workers are like angels. They care for not only the patient, but the family too. They see death and sadness all the time and they still show up with a smile on their face and a hug for anyone that needs it. I know we couldn't have made it without our hospice nurses.

      I pray for you to have the strength to make it through this difficult time. You are not in this alone and you need to take care of yourself, too. Know that we are all on this network for the same reason. All you have to do is reach out...someone will be there.

      about 5 years ago
    • Blue's Avatar
      Blue

      Dear Ncbb,
      Several years ago my husband and I, with the help of Hospice, cared for his sister in late stage breast cancer. I think she felt relieved with us where she didn't have to worry about her day-to-day care, food, laundry and so forth. She was also the recipient of our love and round the clock care in our home. We were able to control her pain by using morphine, pills by mouth and also skin patches.
      Hospice was most helpful in managing her care and her pain. She eventually passed in a calm and peaceful state.

      about 5 years ago
    • Blue's Avatar
      Blue

      Ncbb, Because I have been through hospice care for my mother and sister-in-law. They both improved when they knew they could remain in their own homes. This is a time of tremendous fear and vulnerability for them so they find balance by staying in their own familiar surround. Ideally, you would want a loving family member be with them day and night with Hospice as a backup as needed.

      about 5 years ago
    • Marisa's Avatar
      Marisa

      I agree with you all - in-home hospice was a very difficult decision. My friend refused hospice for so long because it meant "the end was near" if hospice had to be called in. Now, 1 month in to the hospice visits, my friend looks forward to his nurse coming every day to take care of him. I don't think I could face the day without knowing our wonderful hospice nurse will be there taking care of him and reassuring me that we'll make it through this difficult time. Prayers to you all in your very difficult journeys.

      about 5 years ago
    • Ncbb's Avatar
      Ncbb

      I will admit that this forum and family is a great comfort to me. I know in my heart that hospice is the only way we will be able to fulfill her wish of dying at home. I do not live with her and have a family and business of my own ~ but am only 10 minutes away driving by the speed limit, faster if I break it :) Her house would not hold me anyway other than the couch and she drifts between there, her recliner and her bed. There literally is no room for anything else to be brought in (like another bed or even a cot) without purging her house of the very belongings that she wants to die around. I am there daily, checking on her and taking her to her Dr visits and tests. And have been by her side since Sunday when she was put in the hospital to get her pain under control, have the tube inserted in her lung and have her GI tract checked again. She is still there as of today and we are moving her to a nursing home/rehab center through Paliative (sp?) Care (which is provided by her hospital). She plans on staying only a couple days but can stay up to 20 if need be. We have made a pact that if it looks like it could be "any day now", I'll back the truck up to her window if necessary and load her up to take her home to die instead of there.

      Once again, thank you all for sharing, your understanding and your brutally honest answers. I think I appreciate that most of all <3

      about 5 years ago
    • shauna0915's Avatar
      shauna0915

      Ncbb, One thing you'll find on this forum is that none of us "sugar-coat" anything. That's why we're here. The "outside" world tends to handle these issues with kid gloves and we need lead-filled boxing gloves...if you get what I mean. Palliative care is basically like hospice in the hospital. Make sure you stay on top of the doctor(s) and get answers about her condition if you're truly serious about getting her home to die. Things can change very quickly and they may not release her to go home if her condition is unstable. Make sure her wishes are known to all at the PC facility and that the ultimate goal is to get her stable enough to go home. Hospice has volunteers that can sit with her, read to her, whatever...just ask what all they have available. It's a very valuable resource...just like WhatNext. We all shoot straight from the hip, so don't ever hesitate to ask a question. Wishing you the best! xoxo

      about 5 years ago
    • Button's Avatar
      Button

      I'm not sure what 'stable' is. My mom was getting treatment about 4 hrs from home, and my parents were staying in a temp apartment. When it was time to go home, I left a business meeting, dad packed up their stuff in his truck and mine, and I drove the 4 hrs with my mom and her oxygen tanks next to me. She had been admitted to the hospital for hip pain and was ever optimistic the rehab would make it better, but it was really the cancer spreading. She was delayed in treatment for it because her family dr kept telling her it must be a fracture from a fall... never checked for cancer until her follow up with the oncologist. I agree with shauna, be proactive with the drs. But the bottomline is no one can force you to stay where you dont want to... my dad checked himself out of the hospital when admitted with kidney stones because he told them he had to be home to take care of my mom...
      keeping you in my prayers!

      about 5 years ago
    • Ncbb's Avatar
      Ncbb

      I show up with copies of her Living Will, Last Directive and my POA for all things medical and financial everywhere I go. I know what she wants and even though I don't like the idea of pulling the plug, I understand that she doesn't want to be "manually" (her term) kept alive and have promised that I will pull the plug. We have a resuscitate order but if machines are needed to sustain her life, she wants the power cut off. It is all very cut and dried and spelled out legally. Her funeral is all planned out and paid for and all of that was done years ago before we even found out about her cancer in January 2012. I look forward to the help and support of hospice. As you all know, its one XXX of a road to travel.

      So here's a second question: Pat is of deep Catholic faith. Not feeling it so much anymore. Still takes communion when offered at the Catholic hospital but not going to church and very upset with God about her "lot". She doesn't want to talk to cancer survivors from her church, she doesn't want to talk with her Priest. I'm not of that faith and not sure how to deal with this latest development. Any Ideas?

      about 5 years ago
    • Button's Avatar
      Button

      There is no right answer when dealing with someone's faith... since she's open to the hospital's catholic service, maybe she would be open to speaking with the hospital's priest? Or, maybe you could speak with her priest or the hospital priest for some guidance first.

      about 5 years ago
    • Lost904's Avatar
      Lost904

      My dad had decided he wants to die at home and has had home hospice since November of last year and the Hospice Nurse is AMAZING. She is so good with him and my Mom and I. They really suit the needs of the patient. I am glad with the decision and very thankful of them each and every day. They provide so much assistance and are always there if we need them. Wouldn't change a thing. He has been struggling with Stage IV Cancer for going on almost 5 years now and I strongly believe it is nearing the end but its a long roller coaster ride of events and symptoms that we don't know which end is up. I keep you and your family in my prayers. Everyone is different. They gave my dad 3 years and it will be 5 years in August. When he started Hospice in November they thought he wouldn't make it till Christmas, he's still hanging in there. Now they think it will be before the end of the month and sometimes I think the same thing but other days it looks like he'll make it another month. Hospice is a wonderful choice and believe me..I know it's hard but my only advice is stay strong and take one day at a time. That's all anyone can do.

      about 5 years ago
    • Mollie's Avatar
      Mollie

      My grandma just decided to stop chemo. We will be going from transitional hospice to full hospice soon. Her oncologist, the angel that he is said he would still see her at no cost if she felt like it. It might be worth asking the doc about that. Even she doesn't need to see him just knowing he's there may make her feel less abandoned. Hope that helps

      almost 5 years ago
    • lilalilac's Avatar
      lilalilac

      My My husband had lung cancer over 12 yrs ago and had hospice it was wonderful help to us and particularly him.

      over 4 years ago
    • Mollie's Avatar
      Mollie

      It took my grandma about a month to give the go aged to go full hospice. Once they did the intake and the RN, LVN, and social worker came out things settled down to a once a week "checkup". For all of us, my grandma included, the best thing about hospice is that they're available 24/7, literally. This Monday, which was a holiday, we had some huge concerns and a nurse came out to help us within an hour of our phone call. They are the most well
      Put together organization I have ever seen. On last Friday we needed more morphine, they were there in 1 1/2 hours with two bottles, just in case. They also provide respite care if YOU need something, grocery shop, Dr. appt, whatever you need they are on it!!! Let me know if this helped and if you'd like my phone number or email let me know.

      over 4 years ago
    • smidge's Avatar
      smidge

      Hospice care is a good thing! My mother has stage 4 lung cancer and I have her in my home, under Hospice Care. They so not offer preventative, but make every attempt to keep my mom comfortable. They take care of all medications, nurses visit every week and a doctor once a month. When times get rough, they can and will bring in Crisis Care nurses around the clock. Just my 2 cents, but I don't know what I would have done without them.

      over 3 years ago
    • amkates' Avatar
      amkates

      i just started hospice myself about a month ago. I also thought it meant I was giving up and was going to die soon. But to be released from the hospital since they decided that no more can be done to fight the cancer and I was in so much pain the thought of just going home was not an option I still hurt too much. My dr.s promised from day one I would not be in pain so why am I. Well anyway where I live they have a in-patient hospice called Home-stead, and that is where I was transferred until the got the right combination of meds for me to be pain free. I was still nervous but the minute I was taken in the front door all fears were gone. Each room is a quilt theme not a room number, it looks and feels like an upscale SPA or B&B. The nurses were able to get me the right meds and then I came home. However they also have a respite program that if I or my family need a break, or someone at home gets sick or has an emergency I can check in for 5 days of rest. I now have Hospice visits once a week until the time comes I need more. The nurse and caseworker are like friends to my family and myself. They have even called my daughter-in-law to check on her, she lost her dad suddenly the week I went in hospital and is 3 months pregnant with my first grandchild, I would not trade this experience for anything. I do not know what the future is going to hold but being comfortable with them now will make the transition easier towards the end. Did I mention I am only 50 years old. Keep the faith I do.

      over 3 years ago

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