He won't consider hospice but wants transfusions. Help?
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.
