He won't consider hospice but wants transfusions. Help?
My sister's husband, Bob, has end-stage leukemia but is alert and oriented, and states he wants to live as long as possible. He has recurring visits to local hospital due to low platelets. Transfusions make him feel better. The hospital staff keeps trying to get him to go on hospice. One nurse even said other people were not getting blood transfusions because it was being wasted on Bob. Now his regular oncology doctor if refusing to see Bob, and the hospital isn't sure what to do with him, so they keep pushing hospice. If he does not receive blood, he would be dead within a week. My sister won't give ok for hospice, she says she would feel like a murderer. Bob says he wants the transfusions and does NOT want hospice. Any suggestions will be appreciated.
This is a very complex issue, and while I'll talk about several parts of this, I would urge you and your sister to find a counselor that can help you in person.
But right now, what we can do is take a look at the situation: Bob could be experiencing two things, separately or in tandem, that are common. These are denial and "restlessness." He may be experiencing denial in the sense that he may realize he is sick, but he may be in denial that he cannot be cured. He may, at some level, think that if he continues to get the transfusions he will eventually replace the bad with the good and he will "beat it." He may be restless in the sense that he does not feel ready to die, and therefor must do everything he knows how to do to stay alive. Often in this case, he is mentally or emotionally restless. There are things he wants to have done or said that he has not. While you cannot help him easily to overcome denial, you can help him with unresolved issues, outstanding conflicts or unachieved goals. Here's one area where working with a therapist can especially help -- He or she can help you to focus in on particular actions or words that will illuminate what regrets, needs, or fears he has about dying. Maybe Bob would also consider coming and talking to the therapist. Either way, by addressing these issues you can ease him into an end of life that you are all more ready to handle, including your sister.
Concentrate on leaving his legacy WITH him. He may (and should) have his will, power of attorney, healthcare power of attorney and DNRs signed, as should your sister and you. Completing these is not only legally a good idea, but it is also a good way to occupy your minds. If you can, try to plan your memorial services (all three)as well. I know this sounds like a stretch, but it is sometimes comforting if you all can do it together, so you're not singling him out.
Now we need to talk a little about the physical side: This may sound harsh, but if Bob is close to death, what is pushing there is not lack of platelets. The advanced stage of the leukemia and its effects on the total body has made him a candidate for hospice, not the low platelets. That is only one piece of the puzzle.
If the oncologist has written the order for hospice, he has enough evidence that leads to prognosis of less than 6 months to live, so all curative treatment should be stopped. (You say 1 week, so you may know this.) This includes transfusions. I'm sorry to say, the oncologist is not obligated to help after this order is written, and it is curious that there is still someone who is writing the order for his transfusions.
Hospice is a wonderful program of care that concentrates on social, spiritual, cultural and physical comforts for both the patient and the family. This includes management of pain, energy level, nutrition, grief and many other areas. In fact, Bob will be getting more medical attention through the program than when getting transfusions (and likely treated better). This can be a scary decision for your family, but not being educated on how to handle end of life (during and after) is scary too.
There are many resources to find out more about hospice. Www.hospicenet.org/html/faq.html has an easy-to-understand Question and Answer section. Additionally, I love Larry Beresford's tender and informative book "The Hospice Handbook" available on amazon.com. Further, I have written a short handbook on hospice and palliative care, found on my website, www.CompassionateCaregiverOnline.com.
By agreeing to have him enter this program of care, your sister is doing the best thing she can do to help him prepare for end of life. This is another area where a therapist could help the two of you, in acceptance and working through the issues. Ask the oncologist's office manager for a referral, or talk to a chaplain at the hospital. They are usually available free of charge.
You're being a wonderfully supportive sister. Good luck, and write again if you need to.
I am very disturbed by the response of Bonnie Bajorek Daneker. If she is such an expert she should know that
"Contrary to some common misconceptions, opting for hospice does not mean you must forgo all medical services. No laws or regulations prohibit hospice patients from getting radiation, chemotherapy, blood transfusions, tube feedings or other care that might prolong life, if the intent is to increase comfort. A blood transfusion may reduce delirium, for example." Reference: http://www.jsonline.com/features/29338029.html
My mind is boggled by her statement:
"If the oncologist has written the order for hospice, he has enough evidence that leads to prognosis of less than 6 months to live, so all curative treatment should be stopped. (You say 1 week, so you may know this.) This includes transfusions. I'm sorry to say, the oncologist is not obligated to help after this order is written, and it is curious that there is still someone who is writing the order for his transfusions." This implies that the order written by a doctor is definate and the patient has no choice in the matter. I disagree with this strongly, no one can force anyone to go on hospice care. The physician has a duty to the patient, and cannot abandon the patient.
I am supriesed this "expert" had such information to give. Disgusting.
I am in the same boat as Bob's wife. My husband is also suffering from Leukemia and is now enrolled in hospice and I feel it was a mistake to put him there. This is definitely a place to wait and die. We are taking him out tomorrow and taking him home. They have done absolutely nothing for him. We were told that he would get what he needs to make him comfortable and to me that would be blood and platelet tranfusions when necessary. When he gets these there is a 100% turn around. He converses, reads the newspaper, watches tv, goes to the bathroom unassisted. I know my husband is at the end stage now but if transfusions will make him better for a few weeks at a time, then it will all be worth it. Hospice policies need to be changed. For us hospice means you are giving up and I feel you should fight to the end. These policies need to be changed and Bonnie Deneker should be ashamed of herself.
Sonjad, Goodluck with your husband and your attempts to bring him quality of life. My dad was diagnosed with aml in April, has had two rounds of chemo, but did not get remission. We chose for him to go to homehealth, and not hospice precisely for the reasons you stated. Blood will not cure this horrible disease, it is about comfort and quality of life. As long as your husband is responding to the transfusions I think she should pursue them. Same with my father. The statement of prolonging the inevitable in the "experts" response makes me sick. I suppose all of us should quite taking all medications, should stop eating and drinking and taking air into our lungs to breath. I mean, without these things we would surely die with in a week, and it is only postponing the inevitable. What a crock. Everyone is prolonging the inevitable. Should patients with end stage COPD on hospice have their oxygen taken from them? Sheesh.
i to think this ans wer from Bonnie wzs not good. i just went thru mh husband dying form oral cancer in june and we went thru this same issue. i think hopsice is for someone who does not want to live. my husband was only 58 and did not want to die and going into hospice was horrible for him and for me too. why can't we fight to the bitter end? the reason they are pushing to get him to stop the transfusions is that it would be more cost effecrtive for the system. hospice is cheap and they wont pay for anything that will extend your life. it is up to the patient whether you want to go into hospice or not. it is not up to the physiciian to make that decision. they can recommend it for all th right reasons but in the end it is the patient that gets to decide. i think we all need to be very concerned about how hopsice is tyring to kill all our loved ones sooner for cost effective means. remember hopsice is drivin by Medicare guidlineds so insurance companies just follow it. we stillhave our rights and even when dying we should not give them up so i way fight to the end people!
I am a nurse and have 2 parents with cancer right now. One thing I do not see mentioned is "Quality of Life". It should not be about longevity - quality is the key. The fellow that felt better with transfusions has no reason to stop them if he is benefitting-though there is a limit to how many transfusions a person can safely have due to possible kidney failure and other complications.That could be why the physician did not continue to order these. The other issue is the discomfort by all the treatments, the side effects and your life becomes your disease. I have experienced this first hand. My mother suffered a stroke shortly after completing a year of lung cancer treatment & brain tumor treatment- granted she has been with us for a little longer as far as time but her qualify of life declined once the radiation and chemo began-it consumed 9 months of her life-she was sick, tired, depressed and unable to enjoy all life has to offer. I would have preferred her to be here for a month feeling good than to watch her suffer for years and lose quality of life.The radiation and chemo continued to affect her for 6 months after completing them. She had deficits including unsteady gait, poor appetite, fatigue, nausea, weakness and early stages of dementia-then a stroke that paralyzed her left side of body and loss of body functions & dementia. The stroke, most likely, was brought on by the vascular compromise created by the brain radiation. Dad has leukemia, diagnosed 6 months ago, oral chemo, blood transfusions, blood draws, dr appts and barely any energy to go see mom or care for himself. He was told he could have 6 months WITH treatment or a few weeks without treatment. So he has now hit the 6 month mark but his life has been all about the disease and treatments with no enjoyment-just time-what good is the time if you don't enjoy it? After suffering a heart attack, and pneumonia, he is now on "comfort care" (no treatments other than to keep him comfortable and pain free). With new technology and treatments, patients feel compelled to continue fighting even when evidence points to the fact that the disease is not going to respond. Before you judge the doctors, families and hospice-understand that life DOES end and wouldn't it be much better to enjoy every minute of it? How many times have you heard people say they just want to go to sleep when they die. No one wants suffering and years of not knowing who they are. Hospice takes care of the medical bills, provides one on one care, family support, equipment, respite care and assistance with personal care. You can have hospice for your loved one in the nursing home, some areas have Hospice houses and a few get to stay home. Hospice cannot afford to be paying for treatments so that is why they have criteria that limits the type of treatment they will pay for. Their staff is specifically trained for the dying patient and their focus is to make the transition as painless for the patient and the family. This is END OF LIFE care-it is fantastic if you understand the purpose and goals.
I think hospice is a choice, and people should have a choice, MY MOM HAD A TERRIBLE TIME IN HOSPICE, THEY STOLE HER GOOD DAYS, BY JUST FOCUSING ON HER DEATH, I agree with the other comments about fighting to the end, if you are not ready, my brother is 46 and has ALL Leukemia, nothing is working, but miracles do happen, and it could happen for him. Health care professionals need to remember that they are the patients employees, and it is the patient who decides.
My dad has leukemia and has entered the final stages. Final stages meaning his white blood cells are gone, his platelets are low and red blood cells are hanging around 5/6 thanks to blood transfusions. He just got his last transfusion and in about three weeks we will need to deal with his death. It is hard for I know he loves life though this is not any type of living for him.
In Oregon, if one is getting blood transfusions they can not have hospice. We are offered therapy care but not Hospice.
We are lucky he is willing to let go. Though let me tell you, hospice will not come as long as he is under a doctors care.
My thoughts, since I know because I'm going to lose someone special: And hospice had been *the best*!! The only person who really should make the decisions about their life and treatment options is the patient. Reading all of the above makes it very clear how much we want the very best for those we love, be it doctors, nurses, hospitals, medications, treatments, help, homecare, transportation, food that tastes good, freedom from pain -- WE WANT THE BEST because hate to lose those we love. A dear friend has myleodisplasia (MDS). He's around 75. He looks great. But....he's dying. His disease is terminal. He sure didn't like finding out what was ailing him, but he had to face it. He made the decision regarding getting chemo. It made him feel terrible, and he didn't want to spend the limited time feeling terrible. He wanted to enjoy every day that he could. he stopped getting chemo. Although not everyone in his family supported his decision, it was HIS decision. His wife understood that he wanted to have quality time, that he knew the quantity was limited. In his case, transfusions did help him feel better. His wonderful doctor was straight forward from the beginning, and so the fact that there would come a time when the transfusions no longer helped was not a surprise. This came about just a couple of weeks ago. Instead of getting his energy back and feeling better, my friend took a turn for the worse, and his blood counts just won't get better, even with another try at the transfusions. I think about him all the time. And was Googling, "End Stages of Leukemia" when I came upon these posts. My friend was told about hospice last summer - about 8 months ago. Luckily he was able to continue receiving transfusions, because they are a comfort measure, according to the hospice organization he uses. For him, hospice has been a "Quality of Life"-saver!!! And they continue to be. Everyone knows he is dying. Only the good Lord knows "the date stamped on the bottom of his foot" - if there is one (an inside joke). No more "off to the hospital", or dr. appts, or transfusions. Now it is a comfortable hospital bed, visits, cards and calls from family and friends. Yes, more family visits, and their understanding (if only for his sake). And -- he still looks great! Really! I know that the *UNKNOWN* lies ahead. All of us who love him want to know what's, what to expect, how long....and we DON'T want to know....because we love him. If we could we would have this all be a dream. Especially his newlywed wife of just a couple of years. Just imagine that! I'll tell you what my reality has seen -- Love, Caring, Time together, and more of the same. Not always easy. They pick each other up!! My friend knows he is blessed! With a loving and caring and wonderful wife who would go to the ends of the earth for him, by friends who visit, call, and stay up on how he is doing -- and pray for him, and by family ties across the country!!! And he would tell you himself : his Dr., nurses, and his hospice team!! his hospice team!! his hospice team!! 3 cheers, yes!!!! I can't tell either how much they mean to him truly. But, they couldn't live without them...figuratively and literally. They are their comfort,their companions, their support, their life-line, and will be their end of life line. That is their job, and they are appreciated for it, over and over again. Please, don't YOU knock hospice. It's not about you.
My brother died in an Irish hospice in Limerick City with all his family around him 16 years ago from oral cancer. He was very well looked after and I would have, back then, heaped praise on the staff. Alas, 3 years ago, another brother died from COPD in the same hospice, alone, not one phone call through the night to let us know how sick he was for the simple reason the staff just didn't seem to care. This would only apply to the Hospice and not our hospitals who show excellence with care and nursing. The first day he was admitted I saw the drastic change that had occured over the years, staff chatting in the hall, laughing amongst themselves, young nurses, both male and female having a good time. I enquired about setting up a vigil on that first day but was told there was no need, we needn't worry about that for quite a while and they would let us know when that time arrived. He died 14 days later. The wrench that is left in all our lives is massive, to think of his final hours with no one, us, his siblings or his children near him to whisper goodbye is so lonely and painful. Another brother is dying at present from AML (lukemia) and is very close to the end. I am praying his wife won't send him to the hospice for obvious reasons. I am dying of cancer but have asked my husband to allow me to die at home, surrounded by my remaining siblings, my beloved husband, my three sons and daughter whom I love with all my heart. I won't care about the physical pain, the pain of maybe being alone would be far greater. In contrast to this, my friend's husband (RIP) who lived in Florida, US for years came home last summer suffering from AML also and was immediately hospitalised here in Limerick, Ireland for 2 months. They were appalled at the conditions of the hospital, unclean and staff overworked but amazed at the care, support, kindness and nursing that was shown to him. However, on returning to Florida her husband's treatment was very quickly stopped and he lived for a further 3 months. She said if they could have had the care of the Irish medical staff in American hospitals it would be a perfect world. None of us have it right. It seems to come down to how long insurance policies last in the US and the drastic cut backs by the Irish Government affecting our hospitals, making them akin to third world countries, how sad is that. Surely our countries could get it right. Are we not entiteled to decent care when our lives are ending, having lived decent lives, being decent citizens and worked for ourselves and our country all of our lives. Surely our children and our children's children deserve to see their loved ones leave this world in a dignified manner. When it is brought down to Euros or Dollars it becomes immoral.
It is the patient and their family that should make the decision as to whether or not to allow hospice into your home, I can tell you that there is not a doubt in my mind that hospice has a hidden agenda that the staff and nurses may not even be aware of, although they would have to be pretty naive. We had to tell hospice to leave, they started making decisions only the family should be making. And hounding us in the hospital. Do not trust them with your loved ones.
Hospices are not all the same. I knew about one that let my relative died without even try to keep her hydrated.... another realtive is now in "hospice" at home with another company and he is receving a good treatment. He has leukemia and has received transfussions when necessary, he has oxygen at home etc.... but the decisions have to be made in the family with the participation of the patient . I belive that God has the last word on life and what we have to do as relatives of a terminal patient is provide him/her with all our best resouces so he/she are confortable and treated with dignity and mercy and taking in account the quality of life. All of these includes expressions of love, remind him/her good memmories, make him/her be sure that the people that satys will be ok so it takes part of the burden. When the patient and relatives have Jesus the Lord in their hearts everythings is better because He provides comfort. God bless you.
I find the previous entries about Hospice care in other countries amazing. My husband has AML and was given a very short time to live after hospital care which could not cure him. We returned home with Hospice support and it is 14 months later. They support cancer patients in their own homes and are incredible at this. Also he is under his own doctor and receives transfusions when needed. These can be at our public hospital or at the Hospice on a day stay basis. We live in New Zealand so its a completely different system where in fact private medical care would not have actually got us any better care. Hospice in this country must be very different to American Hospice. You dont go into the actual facility except if the carer needs a break, or you need sympton control or at the very end in some cases. And you are treated with great respect and warmth but in a realistic way. No one pretends that you are going to be anything but terminal but at the same time you are encouraged to make the most of the remaining time. Hospice is funded by some degree by the government but each is run by a board of trustees and a huge amount of community fund raising including a big charity shop of everyones unwanted clothes and other goods. It is a very professional organisation though and audited regularly by outside health professionals. My husband has made it through three infections including one of pneumonia. They have supported me in my role as caregiver to him and I read those other comments here and are shocked that people in such an awful place that we all are in this situation have to cope with that as well. Its bad enough living through this with full suport from everyone around us. I was also shocked by the comments by Bonnie. My husband started transfusions months ago. Had three and then went on to have none for 3 months when he was producing his own HB at almost normal levels. Now he has pneumonia again and may not recover from it this time but he has had a transfusion of three bags of blood when his levels got low. No one really know how a disease will progress and how long or what quality of life you are going to have is what we have discovered. We were told three months and then then later that the doctor had known someone to live six. Well its almost a year longer than that 3 months so maybe he will be telling future patients a year...........
People with leukemia often come to think of transfusions as a lifeline, because it's the only thing that stands in the way of death. It's often difficult for people and their families to let go of that lifeline as death approaches. Yet there comes a time when the lifeline no longer works. With good palliative care, the symptoms that may develop at the end of life can be well controlled to keep the person comfortable.
As physician I can say that the ONLY person who should make the decision to terminate treatment is the patient if he or she is of clear mentation. Transfusions for patients with end stage marrow failure is absolutely their choice and will prolong their life. Hospice rule vary. Where I practice they require that transfusions be stopped prior to initiating their services. However, it is the PATIENT'S decision when their quality of life has diminished to a point when comfort care only is appropriate. I am disturbed by the treatment of the original patient in this thread.
My daughter is at end of life suffering from AML. She has decided to stay at home and we have hospice services come in to help. She still goes to the hospital and received platelets and blood. Hospice will give her blood but not platelets. The doctors mentioned recently that she is close to the end. I know she complains of feeling more and more tired. We, the family, plan on visiting her and comforting her however we can until the end comes for her. She is only 33 yrs old.
My mother has leukemia and is under the care of Amedysis Hospice care where she has assistance w/ bathing, physical therapy, nursing staff, a physician who makes housecalls including xrays if needed and continues to receive blood transfusions every 3-4 wks. They are a great team to have and a lot of help for the family and patient as well including social workers as well as spiritual guidance/ care. I would suggest you let him and your family enjoy the final times he has to the fullest. Good luck to you and your family and you are in our prayers!
my brother died from luekemia in noverber the dr. in forth worth sais she had made him 8 platelets and was not going to make any more. i feel she should have made as many that he needed to live. he died at age 46 i think the docters gave up on him.
Hello everyone, I am from Sydney Australia. My husband was diagnosed with AML 18 months ago. Spent approx 8 months in hospital with intensive chemo for 3 weeks at a time. Numerous blood transfusion, platelets, plus ended up with a colostomy as needed colorectal surgery to remove part of his bowel as secondary to his AML. He has relapsed for the 3rd time now and slowly all his bloods are going down. So we are doing blood transfusions every 3-4 weeks. I have been told he has a couple of months on this regime and to think about Hospice. No way!!! Then he knows this is it. My understanding is with end stage AML, they go into an unconcious state - is this true! I am scared, so imagine his anxiety and they have also put down'Not for Resusicitation', that is a final thing as well. I need support, but dont know who to go or approach as I need to stay strong for our 6 children. I am working full time as my husband naturally is unable to work anymore. Has anyone found counselling useful? Thank you
Aussie Girl, please check this link out. It has a great support group for AML http://community.lls.org/community/bloodcancer/livingwith/aml. It was so important for me when we were going through this. God's peace to you
No one person has all the answers or knows the outcome for any one person. My Dad is over the time given by doctors, and continues to remain positive even though his body is failing. No one should ever tell another how to handle their illness. Respect should be given to each person-ask them what they want or how can you help. Bonnie Bojorek is no expert on life or death and not every answer is out of a book.
People need to understand they dying process and why hospice would not want to push hydration on a dying patient. You see, when the body is dying, the systems are shutting down and that includes the circulatory, digestive, kidneys, ect. As the body begins to die, it becomes inefficient and unable to function as it did when it was healthy and disease free. If a person who is dying decides that they don't want to drink, don't feel like drinking, or physically can't drink any longer, forcing fluids on them via hydration is not an answer. All you will end up doing is causing the patient undue pain and discomfort due to swelling of the legs and fluids collecting in the lungs. The body is unable to handle this extra burdon of fluids which is why they stop taking fluids in. Same goes for eating. The body knows when it needs or doesn't need food. The GI tract begins to slow down and there may be food in the stomach from the day before so forcing someone to eat when they are not hungry will only cause undue nausea/vomiting. Respect the pt. wishes if they don't want to eat or drink. DUE provide wonderful oral care, toothettes to moisurize the mouth and lips, lip balm, ect., but don't force them to drink for aspiration is a high risk and discomfort in general. In the case of transfusions...continuing to recieve transfusions when the end result will be the same, just doesn't make since. All your days you will be spent getting transfusions in an office instead of spending time with family and loved ones doing what you want to do. Its like trying to bail out a sinking boat with a massive whole and you have a small cup. Your not going to win and your wasting your time and energy and what will you have to show for it? Enjoy the days and weeks you have at home instead of in a office...bring quaity back to your life that may have been lost during all the monthes of treatment. I've found often that cancer patients often never really get good pain control while they are in treatment for their cancers. It isn't untll a pt. goes on hospice do they actually get good pain management because we will give a pt. as much pain medicine as needed to maintain comfort to the level that the patient is satisfied with. People finally are able to enjoy time with their families, do the things they have wanted to do and actually are pain free when for years they may have had to suffer...doctors in treatment are unwilling to go to the levels neccessary to treat pain while someone is still wanting to undergo treatment....there is a "roof" that they will hit and won't budge beyond that....Hospice is wonderful, its of course for the patient but also support for the caregivers/families that are careing for the pt. Social workers who can help set up caregivers in the home, spiritual support from chaplains who come from non denominational to denominational as the pt./family desires, volenteers to run erands and give caregivers a break, and then pharmacists and doctors who are great resources for finding the proper medication regimine to address the pt. needs. Its such a wonderful service and I'm so thankful to be able to be a nurse providing care for my patients. I wish you all the best of luck in your individual journeys. Sometimes, people have to hit a wall, have a crisis, to realize what is most important to them...this is their journey and we are simply walking along with them and providing them the support they need with the choices they make...and hope they make the best choices that are possible, but support them when they choose the hard road as well....
To the previous poster, I totally and completely agree with you about not forcing fluids or any other kind of thing to a person who is actively dying. There however is a great difference from a person who is actively dying, systems that are shutting down and death is immenent. In the original question that is not the picture that is painted. That';s not what I understood anyway. In my dad's situation, he had AML, attempted two rounds of induction chemo, and did not get remission. He was given a four week prognosis on discharge, but dad was awake, alert, ambulatory, strong. He was not ill, his bone marrow was shot. But you cannot live without blood. He went home on home health because hospice did not allow blood products. My dad lived another 9 months. Good months. Digging in his garden kind of months. He had lived life, he was going to church, gave up home health, because they said he couldn't leave his home, and he had things to do. He went to church, went to the grocery story, went to the library, played his weekly game of cards with his group of long time friends. He experience birthdays, anniversarys, Christmas, New Years, Valentines days all at home with his love ones. He happened to have apptointments at the hospital weekly for a while for blood products including platelets and red blood cells. Then he went several months without needing any blood products. Then his counts trended down and he was back to weekly blood products. He did this for 9 months. He had amazing quality of life. On March 20th he was doing just that, digging in his garden. He took a nap, and then woke up later that evening with a fever, feeling week. He went to the ER that night. The 21st was my birthday. I got to have my Daddy sing to me happy birthday from his hospital bed over Skype as I live half way across the country from them. I video taped it, and treasure that to this day. On the 22nd he was told he had an infection in his gut that was not responding to antibiotics and he would need surgery. The surgeon gave my dad a 95% chance of dying if he chose the surgery, and a 100% chance of dying if he did not have the surgery. The fighter he was, he chose the surgery. He died the next day from the overwhelming infection regardless of the surgery.
So that's our story. Hospice is amazing in many ways. But not for everyone. The blood products allowed my dad to have an amazing time with his family for 9 months longer than anyone thought he should have. I am glad he made that choice. I have my own thoughts about a surgeon who would take my dad to surgery, I am not sure he should have been offered that option, but he was and he made his choice. And I support my dad's ability to make his own choices. Each situation is different, and blood will never cure a disease, but it can bring comfort and quality to life. I wish hospice gave their clients the choice. That's all I want to say.
I am so sorry to all of you that have loved ones with leukemia, or if you have it yourself. I have Leukemia. I found this site by google searching what kind of death this blood cancer might give me. It's very scary to read about the sense of suffocation and the possibility of death by septic poisoning from infection. The choice to fight to the very end or throw in the towel is completely personal to each patient. People should do exactly what suits them. I myself, at this time, do not feel that "fighting" to hang on is the path I would choose. However, the body wants to live and that is a primal will to survive, so we don't know what we would do 'til we get there. I do know that by getting treatment I extended both my life and also extended the mental suffering that comes with living with Leukemia. I am hardly stoic, and probably stoic types fair better with this kind of thing. Whichever we choice, it is a very rocky road. It won't be easy no matter what we choose. This is a difficult illness to bear. May you all find some peace one day, if not today. I am so sorry for your suffering. Go softly on your journey. Many Blessings.
First, to all suffering from this horrible disease, my heart goes out to you. My mother (and best friend) was diagnosed with aml, subtype #4 in December 2011. She went through induction therapy, ended up in intensive care, 4 blood infections, including sepsis and came through it in remission after 7 weeks in the hospital. By July 2012 the aml came back (a few blood transfusion and platelet transfusions later) dacogen became our monthly ritual. March of 2013 the leukemia took off running (count at 120,000 wbc). Tried new chemo treatment (she only made 2 out of the 5 doses). Knocked the white blood cell count back down to being neutropenic again .01. Hoping we stood a chance for more time. That was the first week of April 2013. By mid May, her wbc came in at 35,000. 10 days later at 157,000 and on June 14th, 2013 she left this physical world and by then it was well into the 200,000 if not 300,000. She was admitted into the hospital on Sunday, June 9th, starting with breathing difficulty by Monday night and admitted into hospice facility on June 11th. June 12th was her last words as she tried singing Jesus Loves Me with our pastor. Her breathing was very very labored which they monitored with morphine. To me her death was difficult and I hope she was not conscious enough to realize how labored her breathing was. We were fortunate enough to be in a hospice house not far from our home so I was with her when she left this physical world and my children don't have the last memory of their beloved grandmother in a hospital bed in their home. I think hospice is a very personal choice. We really thought we would be doing the routine of blood and platelet transfusions but her white blood cells took off at such a fast rate that we ended up in a position that her death was imminent and I didn't want her to suffer so hospice was our choice.
My 87 year old mother progressed from "pre-leukemia" 2 years ago, to end stage AML, just diagnosed last week via bone marrow biopsy. Her blood count was down to 5.2, her white count high. I knew the biopsy results would not be good. And I agree witht he nurse who stated above, it's about QUALITY OF LIFE. Mom has not had quality for several years, being confined to her (lift) chair during the day, never leaving the house except for emergent doctor or hospital visits (such as when she dislocated her shoulder from a fall 2 years ago). She wad discharged last week to home, with Hospice care. Hospice has been nothing short of wonderful. Mom has a DNR in place, and I doubt very seriously she will opt for a transfusion, but IF she does, that is a decision we siblings are leaving up to her. She continues to get weaker, but her mind and quick wit are still in place. We are spending every precious moment we have with her during her time left, but we are not going to be selfish and think of ourselves to pull out all stops to prolong her life. We want her to be comfortable, and as pain free as possible. My heart goes out to all the families posting here who are going through this. Sometimes people need to take a step back and think about the patient rather than themselves.
WHATEVER YOU KEEP AWAY FROM HOSPICE.!!!! I say that from experience, I just lost my husband May this year to stomach cancer and if I could turn back time, I would. Make the Hospitals accountable and tell them to fix your husband thats their job. When I was in Hospice with my husband, I knew nothing about the place.. but I know this much... they do not give blood transfusions, they do not give intraveneous drips , and they dont even give you a feedbag, they just give you pain killers and wait for you to die and they even encourage you to help your partner child, mother or whoever to die. not to live... and even though my husband was fading away, he still had hope in his spirit and I had hope for him tooo but it was virtually impossible in a hospice... but in the end it is your choice, I found out tooo late.... so if I were you I would make hospitals accountable to fix your husband cause hospice wont fix him well they can ,, but not your way
Blood Cancer and Transfusions Death panels saving insurance companies scads of loot?
Well, not exactly, but close.
Having cancer, I can testify to the macabre influence insurance companies hold over the medical community and patients, as I require blood transfusions about every 21 days, the cost of each running $4,000. A rule, written and dictated by insurance companies, is that one cannot receive a transfusion until one’s blood levels fall to a point that the insurance company agrees is sufficiently low to warrant the expense of the transfusion. The patient’s comfort, convenience, and safety aren’t in the equation because a rigid blood-count number has arbitrarily been set as a line of demarcation with no deviating. Factors, such as one’s age, weight, overall health, levels of fatigue and lightheadedness are ignored. Whether one can continue to work, drive, care for the family has no impact. No one gets a transfusion until tumbling below the magic number of “30.” This number refers to the patient’s hematocrit level, a factor of red blood cells.
And it’s junk science at its worse. Nothing impacts the timeline for my transfusions. Within 21 days, I need a transfusion, plain and simple, though other patients may have different needs.
Most healthy men’s hematocrit runs around 47. Lance Armstrong’s blood doping gave him a high hematocrit and tons of endurance. Owing to my blood cancer, for decades my hematocrit was uncommonly high, around 53, a number my body addictively loved because I’m miserable when it falls to 30. Years ago, my cancer shifted into a more dangerous stage, my body produces few cells. Each day my counts drop a bit, rather like a gas gauge. Within weeks, I’m feeling so lightheaded, lethargic, and weak I need another transfusion just to do the most mundane chores—walking up a flight of stairs or dusting furniture without stopping to rest. Yet cancer patients are never allowed to maintain their blood near normal levels, because that might cost more. If I were allowed to keep my hematocrit close to 46 and given a transfusion when it dropped to 35, I would likely feel quite normal, despite my cancer, at least until the sneaky disease figures out a way of taking me out. Even more absurd is that all components of blood chemistry are measured with a “range” of low to high, a window denoting normalcy, i.e. normal glucose ranges from 66 to 99. Platelets range from 150 to 450, yet no range exists for transfusions, just one unreasonable number, imposed on everyone.
Now imagine if you went to a doctor who said he wanted to reduce your blood pressure, pulse, temperature, and glucose levels to 40% of normal.
As you left his office, you’d be railing, “How am I supposed to maintain any degree of comfort, my will to live, and the strength to battle this destructive disease with my vitals at 40% of normal?” High school students laugh upon learning that George Washington likely died, not from his illness, but from the phlebotomies (bleeding) that the learned medical community performed in those days. Prohibiting cancer patients from obtaining transfusions until their hematocrit is 40% below normal is the equivalent of bleeding them until they waste away.
And being denied normal volumes of blood is akin to a debilitating torture that inadvertently worsens our hardships, our depression, and saps our will to live. Trust me, the death panels I’ve been dealing with will prove more fatal than the ones Obama has advocated. “Do no harm,” Hippocrates cautioned physicians. May I echo that bit of genius to the myopic and imperceptive experts who hold us hostage?
I did not read all comments posted but wanted to relay my experience with my father which died from lukemia 2 years ago. I was faced with the decision of having to put my father into Hospice and it was the most difficult thing I have ever had to do but it was made. My father would recieve blood transfusions weekly to survive(three years after he was diagnosed) and when the cancer center would say there was nothing else they could do I was in shock that they would not continue. However we battled on and when he needed his next transfusion and antibiotics for constant fever he lived with we just took him to the emergency room so they would continue the treatment. You keep going until he your loved one tells you from the screams and the pain your loved one will suffer you will know it is time to surrender and they will not want to continue aswell. When its time for Hospice you will know and it will be very difficult but you and your loved one will be at peace knowing that there will be no more suffering and you will not have regrets of the decision.
As a Hospice volunteer and husband of a wife with late-stage AML, I am appalled at some of these comments. Yes, Hospice IS about end of life care - and a whole lot more. Accepting that death is imminent is a terribly difficult milestone, but it's one that the patient and family have to reach, each in their own way and own time. Some never 'go there.'
In my years of experience with them, Hospice has been a wonderful source of information, counseling and physical help to patients and families in their home, hospital, nursing home or even a Hospice facility. One recurring theme I see in the above comments is the reluctance of families to accept the truth of their situation - and Hospice will tell you truths that you may not want to hear; or perhaps reject entirely. It is a difficult balance wherein the patient, caregiver(s), doctors and counselors move down a difficult path to decisions that are really, really hard. In the end, it is the patient and family that have the final say to accept or reject services that range from palliative care, patient comfort in the setting of their choice, respite relief, counseling, or just being there for you and your family when the end is near. They will be there for you even after the patient's death if you need them.
In our case, we have accepted that the cancer will win in the end. My wife wishes to pass away at home, pain and discomfort free, if at all possible. Her oncologist, primary care doctor and Hospice will make that possible. And as her husband and caregiver, I can only be grateful that the aforementioned people will work with each other and us when that time comes - and it will.
My advice to those suffering through the agony of an end-of-life situation and it's many decisions is: Reach out. Learn. Accept truth. And be grateful for your time on Earth with your loved ones.
I have Leukemia and have been up late researching what the disease has in store for me (which is how I came upon this site). I agree very much with someone (commented above) who wrote that while she extended her life with treatment, she also extended her mental suffering with this disease. She called it a rocky road. EXACTLY! This is one beast of an illness and any of us that have it or any of you that has a loved one with Leukemia -- well, it is a very, very rocky road. I too, am not remotely stoic, so that way of fighting to the bitter end is not for me. Each of us must choose the best way for ourselves. The issue of Quality of Life versus Quantity of Life is a profound question. I recently refused chemotherapy after a brief "remission" where I had been constantly fatigued, I was offered 6 months of treatment and the suffering that goes with it. I called Hospice to visit the house here in Long Island, New York (in this state and this country, they come to make you comfortable at your home). I am grateful that any medical issues can be met with a nurse to my door and no further hospitalizations. While I am ambulatory at the moment, this will fade and the safety net (of Hospice) below me is not for prolonging my life, but making my death as comfortable and as free of suffering as possible. We have not discussed transfusions, nor do I want them because I know the cancer clearly has won. It is okay to surrender to death when our time comes. I respect all who wish "to fight" the illness to the end, but can only report that there is a peace that comes with retreating from "the fight." My Hospice nurse and counselor are glad I called them while I am still functioning because they can get to know me now and later, when I am losing my life in a bed...they will know who I am. That is a great comfort. They have kind eyes and warm smiles so I will gladly put my death in their hands.
My mother has AML and is left with no more options for treatment. She is registered with hospice, although her care with hospice is minimal. She also continues to be under the care of her oncologist with twice a week blood checks and is receiving platelets and red cells when her counts are low. Right now she is receiving platelets twice a week. Red cells are thankfully less frequent. She is technically dying, but she is living daily. This care allows her to live each day and is well worth it. In January we were told that her time was limited to 3 weeks and it's now been over 3 months. And this has been 3 months of- again- living. She is not bed-ridden. She is visiting with friends, getting out a bit, and enjoying each day. You can receive blood and have the benefits of hospice- it is not giving up. And as for the nurse who says other patients need the blood or platelets- he needs them too. It is his right to receive that treatment. If there is guilt involved- maybe family members or friends would like to donate to their local blood bank in his honor.
I heard this story on a radio program months ago, and was struck by the fact that almost all of the doctors themselves, if irreversibly ill and faced with the need for life-sustaining treatments, would refuse all treatments except for pain medication.
As others here say, each person's choice is their own. But it was eye-opening (ear-opening?) to hear the people most familiar with life-sustaining procedures-- the people who have administered these procedures and seen the patients through to the end-- would not want these procedures for themselves.
One of the doctors in the interview says that doctors in general "have a hard time communicating futility". I think as a society, we all have a hard time with this concept. Just wanted to share the radio segment. WIshing peace to all.
I am a hospice nurse and it saddens me to read all the terrible experiences with hospice. That is not what is intended. The company I work for most definitely pays all costs related to promoting quality of life and symptom management, which includes blood transfusions for leukemia patients. The transfusions are not intended to cure or inhibit the progression of their disease, but they do provide relief of shortness of breath, fatigue, bleeding problems, and dizziness among many others. They often also prolong life, but the focus is to feel optimal for the time a patient has left and that's exactly why we pay for and even encourage our patients to receive transfusions. I'm so sorry to those who have had bad hospice experiences :-(
I am HORRIFIED that the nurse in the story responded that transfusions are "being wasted" on this man - who wants desperately to live!! I am horrified by the response of this expert doctor that a physician should have a written order to stop treatment. Has the quality of life or respect for life ceased to exist in this country?!!! My mother has advanced stages of leukemia and I would do all that I could to keep her as long as possible. She has all her faculties, is still the family matriarch, and is funny and a support system for the family. If I heard any nurse say that transfusions were being "wasted" on her, I would take legal action. I am also horrified that the "new" respect for the elderly in America is dwindling down to a barbaric level. This age discrimination and hatred for our older American citizens sickens me.
My father is in his final stage of leukemia. He has opted to die at home without any more care from doctors. He is under hospice and has been so for some time now. They are a wonderful group in oceanside CA. I worked as a CNA so I know how hard it is for family members to let go. How THEY go to great lengths to prolong a relatives death. It seems selfish to me. It feels disrespectful to the loved ones. My father is lucid and feels no pain. It's his decision and I will respect it. And hospice is here to help. It won't be long now. I felt Bonnie gave a great answer. I also believe as others have said the some of you are having a hard time letting go. There comes a time when you or they need need to come to terms with reality. Your doctors know what that is. If the transfusion could go to a young person with the possibility of remission or to your loved one who is lingering, who would you give it to? Personally I'm not going to linger. Not for my sake and most of all not for my family's.
Bonnie, Thank you for your expertise on this. My mother is currently with hospice. My husband passed away last year with hospice at his side. To all the hospice personnel, you are a Godsend.
I am astonished with some of the 'answers' posted above, especially with regard to prolonging life at any cost and how Hospice is viewed. I regularly donate blood and it disturbs me that there are people who are in such denial that they would consider continuously transfusing blood (from a limited supply) to prolong the life of a terminally ill loved one. I would ask such patients and caregivers to realize that 100% of us will die someday - so please have the class to rationally "let go" when the times comes and not demand extraordinary measures that take away resources from people who CAN be cured. So, as a blood doner and caregiver for a wife who also has terminal leukemia, I ask the original poster to stop blaming others for her husband's coming demise and PLEASE get some counseling.
Concerning Hospice care, which is relatively new in the USA, their purpose is to assist patients and families through end-of-life physical and even spiritual issues that come with that reality. In most cases it can also mean that the patient gets to pass away peacefully at home, surrounded by loved ones, rather than at a nursing home or busy hospital ward. Many Hospices also offer palliative care, even if the patient is still being treated by other doctors for their condition. And Hospice will accept you regardless of your financial or insurance situation (at least here in Connecticut, USA).
Our local Hospice is staffed by roughly 100 paid staff and 160 volunteers (I'm one of them). We provide equipment, drugs, oxygen, and even personal care at your home. We'll also provide counseling for the family, including kids. The range of services is pretty incredible. Maybe "your" Hospice isn't so great - if not, take a look at our model.
And to those who think Hospice is a horrible choice - my sympathies for the long, difficult and lonely path you will face.
The question that must be asked is why hospice has gained such acceptance over such a short period of time, as has assisted suicide, which is now legal in a few states. Were these put in place by advocates who are sincerely dedicated to the welfare of dying patients or were they the secret product of insurance companies who see each of these new institutions as great cost-saving measures? Obviously, hospices are filled with nurses and staff who believe they are easing the suffering of the dying, but have they been hoodwinked by a profit-driven culture that is surreptitiously advancing a profit motive? How sick and vile to live in a nation that places a monetary value on health, healing, medicine, and death.
I was diagnosed with AML 2 years ago at the age of 69 years and was told I had 2 weeks to 2 months to live unless I took chemo and with chemo I could possibly live 6 months to 12 months at most. I chose to take chemo and have had 116 treatments (Dacogen) in the 2 years since that time.
After being diagnosed by a great doctor with the Ga. Cancer Associates, I didn't like the message and began talking to other doctors. A doctor in N.Y. advised me to bypass chemo and just take pallative care. I went to the Duke University Cancer Hospital in N.C. and they advised me to go home and get my affairs in order as I had at most 12 months to live. I went to the M.D. Anderson Cancer Center in Houston, Texas and while they advised me to come and be prepared to stay for 5 days, they sent me home after 1/2 day saying they could not help me. I talked to doctor at the Ohio State University Cancer Hospital and he advised me they would consider a bone marrow transplant if my siblings were a match. They were matches, however the doctors as a group at O/S decided not to accept me due to my advanced age.
All this transpired over the first 2 months after being diagnosed and I came back home and began taking chemo again with the intent to fight as hard as I could and live as long as I could so long as I wasn't bedridden and had to have someone care for me.
I continued going about my daily routines, working every day, going to church. eating out, and doing all the things I had always done although a little slower than in the past.
The chemo treatments are hard on me but I've driven myself back and forth to the cancer center almost 100 miles each trip and after taking chemo, I've drove straight back to work each and every time for 111 of the 116 treatments and not 116 only because I stopped working after 111.
I decided to stop working in December but I continue to stay as busy as I can be around the house and at my property where I have a cabin, a barn and some animals. I drive the tractor bush hogging and planting winter grass. I've restored some antique furniture, worked on my antique cars and trucks, helped install siding on my pool house, painted my golf cart, put epoxy down on the shop floor in my barn, installed 260 feet of water lines to a spot I plan to plant my garden this year along with other projects.
Some days I can hardly get out of bed but I force myself and in time my muscles loosen up enabling me to do the things I do. Perseverance, desire, many many prayers and blessings from the good Lord enables me to keep going and my plan is to continue doing this to the end.
My recent bone marrow test 3 weeks ago showed my cancer cells has increased to 71% of my bone marrow and the doctor said with 100% certainty that I had only 1 to 2 months to live. My immune system is almost non existent and I know the time will come soon that I will not be able to continue doing the things I do.
Until that time comes, I plan to keep working, going out as I please and living as normal a life as possible. I have no plans to use hospice or to have the doctors take extraordinary life saving measures to keep me alive. When the time comes, I believe I'll realize it and let go accepting my death with grace knowing I'm going to a better place.
I say all the above to make a point that I strongly believe attitude is just as important as medicine and care giving. I could have said "woe is me" and done like the doctors advised me to do and stayed inside wearing a mask all day long. I talk to cancer patients every time I'm at the hospital and so many tends feel sorry for themselves and literally gives up. I think back about all the wonderful joys of life I would have missed out on the past 2 years if I would have done this.
We might not be able to beat AML but we can give it a fight to the end by having the right attitude and always believing there's a cure right around the corner. That's what I'm waiting for and it might just happen. My motto is "Keep on keeping on and never, ever give up".
My dad had AML he has been in hospice for three weeks now they said he would pass within a week this hasn't happened. He hasn't had a transfusion for 6 weeks now and they were getting to be less than every two weeks before he stopped them. He is still doing well eats a little bit still. Hospice has been great they take care of him and it's a good support for the families. People that go need to be at peace with this decision for it to be a good experience .
After reading through the comments I want to call my family members and beg them again not to be selfish when my time comes. I also have a rare form of leukemia. I'm 35 years old and there is no cure for my leukemia. Transfusions and chemo are not an option for me. The only options are medications that help my quality of life. I feel like most families becomes selfish in the end and keep people alive when they have no quality of life. For me palliative care has been amazing. I'm at peace with the idea of death and I'm as comfortable as possible in my daily life. My grandfather has AML and has dementia. He was placed into a memory care home about a month ago. He has not had a transfusion since he got there. His blood work this week showed that he is needing a transfusion. The doctors have told us that they don't recommend doing it because his quality of life is gone and we are prolonging the inevitable. It's time to get hospice involved. The reality is that he has a very short time to live. The blood he would receive could go to someone that might have a quality of life still. This is where hospice and or palliative care come into place. They can offer counseling to the patient and family. They can make the patient comfortable. If there is no quality of life, why prolong it? The original post said Bob is not interested in hospice, but what about palliative care? With palliative care he would have a team of doctors and therapists that would work together to help him see what his options are.
It is disgusting that someone is being told that someone else is more worthy of the blood for a transfusion and that it's selfish to accept them. Transfusions ARE palliative and can improve the quality of life greatly. Who at they to tell a patient that his/her life is not worth living anymore due to poor quality. The only person who can decide that the quality of life is that poor is the patient him/herself. I don't know every state's laws but I know there are people in hospice who receive transfusions for palliative purposes.
And for those who have only experienced hospices as being places to wait to die, that's appalling. Hospice should be about guiding and helping the patient and family through the difficult end-of-life journey, providing emotional support, helping family say goodbye, and keeping the patient as comfortable and pain free as possible. It should be about helping to ensure a good death, keeping the patient'so dignity, and allowing the patient to plan and control the process of dying as much as possible--doing things on their own terms. It makes me so sad that some people are made to feel that everyone is just waiting for them to die and even sadder that people are made to feel guilty as selfish for having a palliative blood transfusion when the end is near.
This is a very informative discussion thread by ostensibly compassionate care-givers and curious, if not frightened, patients. I’ve gleaned a great deal of information from it and really appreciate the openness suggested by the personal stories that you all have shared. I hope I can add to the body of knowledge and enlightenment.
Like another poster who is a patient, I came here seeking to better understand the conditions I will face as my LGL Leukemia progresses, a chronic but very rare form of the disease affecting my T-cells. After reading some of these posts, I may have to admit I was somewhat in denial since I am asymptomatic except for having a high lymphocyte count. It’s easy to be stoic and defiant in the face of an incurable disease when you are feeling well and the prognosis gives you many years yet to live a normal life free of the pain and suffering that is a consequence of the disease. Some of these posts helped galvanize me into thinking more about end-of-life issues while I am still healthy and capable of doing things on my own. The biggest take-away from these posts is for me to dust off my advanced health care directive and update it to include language specific to my affliction and managed care near end-of-life.
Based on this discussion, it looks like I need to include specific language in my AHCD about transfusions, concerning how many, how frequently, etc. One thoughtful poster pointed out that while transfusions are a ‘lifeline’ for leukemia patients near end-of-life, as they become more frequent, they can have their own negative side effects. Another poster pointed out the altruistic perspective of refusing transfusions at some point to allow other, younger and healthier people to receive the blood. Since I donated blood through the American Red Cross for several years, I feel somewhat of an obligation to get some of it back (tongue-in-cheek). I'm 64 years old now and based on what I currently know, it could be as many as 10 years before I start requiring transfusions and face those kinds of end-of-life decisions. When that time does come, I want my AHCD to clearly indicate what my medical team and hospice team are to do if I am incapable of expressing my own desires. In the meantime, I'm staying active by walking/jogging, going to the gym and taking natural supplements. At this point in my LGLL odyssey, I am having complete blood counts done every 3 months to determine the progression of the malady. I'm still employed full time but plan to retire December 2016 or 2017, depending on my quality of life and life-expectancy.
I am somewhat surprised that some people do not understand the mission and role of hospice. I also understand that strong emotions caused by existential crises can cloud our thinking and cause us to interpret things differently than they were meant and, consequently, make decisions without fully understanding the implications. I've only had one experience with hospice, my father-in-law, but it only took that one experience for me to fully understand and appreciate the role hospice plays. It is clearly to manage the end-of-life challenges that the patient and family are faced with. Put more bluntly, as others have, it is managed death, but, I might add in my experience, with compassion and dignity. First and foremost, hospice is a choice. No one is forced to use hospice and should only use it when they fully understand what kind of care will be provided. It appears that different states and possibly even different hospice facilities have restrictions on what kinds of care a person may receive while under hospice care. I am fully on board with hospice, whether at home or at one of their facilities, when my LGLL brings me to the end-of-life stage. After my encounter with hospice with my father-in-law, I have periodically taken meals over for the patients' families and staff as a means to show my compassion for what they are experiencing and appreciation for their services, respectively. I have regularly made monetary donations to my local hospice. Hospice fills a very important role and I am grateful for their presence in my community. I am not concerned with the politics or economics of end-of-life because I plan to make all those decisions for myself and use what services I choose at the time of my choosing. By empowering myself now while I am healthy and putting my wishes in writing, I take away any perceived limitations imposed by insurance companies, the medical community or politicians. I also limit the amount of regret my family imposes on itself for not making what they think are the ‘right’ choices for me.
Once again, I’m very grateful for the sharing and passion that everyone has brought to this delicate and emotionally charged discussion. It is enlightening and a call to action for me. I wish you all the best and many years of being well.