Father is refusing additional chemo

[sap483]

Hello. I''ve had a few other posts before about my father''s condition. He was diagnosed with Glioblastoma Multiforme (brain cancer) in January 2008. Since then he''s been through 3 brian surgeries, radiation and several types of chemo. Currently, he''s on what the doctor''s say is the last type of medication they can try (he''s not eligible for any other clinical trials). So, he''s been through a lot, and it''s taken a lot out of him. Due to the disease he has lost much of his vision and his balance and coordination, and then there are the side effects of his medications. So he''s now bedridden and very dependent on my mother and family. He really hates it and is very depressed. His last MRI showed that the tumor is stable, which was good news. However, he has decided he does not want to continue chemo. His argument is that he''s prolonging the inevitable, and is not living much of a life.

So, my family is torn. We want to respect his wishes, and realize that this medication isn''t going to cure him. However, how can we just stop trying and then live with ourselves? We want him in our lives as long as we can possibly have him.

I guess I''m not really asking for advice here, in that I know I have to respect his wishes as he is the one sufferring. I needed to vent my frustrations. If anyone else has had to make a decision like this, how did you deal with it? Did you find that anything helped you come to peace with the situation?

 

[neatfreak]

Date: 8/7/2009 10:45:31 AM
Author:sap483
So, my family is torn. We want to respect his wishes, and realize that this medication isn''t going to cure him. However, how can we just stop trying and then live with ourselves? We want him in our lives as long as we can possibly have him.


I guess I''m not really asking for advice here, in that I know I have to respect his wishes as he is the one sufferring. I needed to vent my frustrations. If anyone else has had to make a decision like this, how did you deal with it? Did you find that anything helped you come to peace with the situation?

Sap-First of all I am so so sorry to hear about what your family is going through. It''s never easy when someone you love is so sick.

That being said, I firmly believe that you would be giving him the best gift possible by letting him choose to die with his dignity intact.

As you can see in your sentence you said "We want him in our lives as long as we can possibly have him." That''s all about you guys-but you need to step back and give your father what HE really wants here. As hard as it might be try to look at it as giving him his last wish rather than giving up on him. You are not giving up on him because you''ll be there until the bitter end to support him. You have in no way stopped trying! Just try to re-frame your thoughts. Instead of trying to keep him alive at all costs, turn your effort into making the last bit of time you have with him into wonderful memories and close conversation with your dad.

Sorry about the rambling...I hope that you guys all get the peace you need to make the right decision. Hugs!

 

[lulu]

As difficult as this is I think you have to respect his wishes. Have you been in touch with a hospice program?

 

[sap483]

You''re both absolutely right, I do have to respect his wishes, my family and I do know that, that is what ultimately going to happen. It''s the being at peace with doing that that we are struggling with.

NF- Thank you! You''re right, I suppose it is all about your perspective, seeing this as honoring his final wishes rather than as giving up on him.
Lulu- My mom talked to his oncologist this morning, and he also suggested hospice care. I don''t know much about it, so I was going to research it this evening. Do you have any information you could share?

 

[Lilac]

I''m so sorry your father is so sick and you and your family have to make this choice. However, I do think that you should respect his wishes if he''s really in pain and adamant about it. It will be very hard - but you and your family will "live with yourselves" after he passes away knowing that you all loved him enough to give him what he wanted (and sacrifice what you wanted) in order for him to be happy in his last days.

Again, I''m really sorry - this is such a tough and sad situation and I''m so sorry you all have to go through it.

 

[rainwood]

Sap -

I''m so sorry to hear about your father. One way that may help you deal with this is to remember that letting your father decide how he wants to live and die is the greatest gift you can possibly give him. It really is. If you were in his place, you would want to decide for yourself. You will miss him terribly, but he will always be in your heart.

 

[purrfectpear]

I see this as your family''s opportunity to give your father one last gift. You can make his passing easy, or make him worry about you and deal with the stress of your family''s issues. I know which one I would choose. Respect the fact that it is HIS life.

 

[MichelleCarmen]

Sorry about your dad. As everyone else has said, grant your dad his wish and let him live out the remaining time with better quality of life.

My thoughts and prayers go out to you and your family.

 

[cara]

What a tough situation. I''m glad you talked to the oncologist; that is what I was going to suggest to get a handle on what benefits your father might get out of further chemo. I was talking with a friend in oncology about how often patients skip treatment (unsurprisingly, at lot less than other doctor appts), but still sometimes people do skip their appointments or call in to ask if their week would better be spent on a family cruise or getting their 19th radiation dose, and he said that they try to give it to them straight up regarding how much benefit is likely. Sometimes there is good science and life benefit to getting those last treatments and sometimes its probably better for all involved that the patient go on a nice family vacation. Or the treatment benefit is so marginal and unlikely to change the final outcome that stopping treatment and moving to palliative care is really a valid call for the patient to make. Which sounds like the case here, its just really hard especially if the family is not ready to "give up" yet and say goodbye.

The situation you might be worried about is that your dad is depressed and worried about the strain on you all and is turning down treatment that could actually extend his life with a reasonable quality of life during that time. But if the doc is suggesting hospice care and your father is ready to stop chemo, really, that says it is time to focus of quality of life and comfort for his remaining days. It is really really hard, best wishes for your family during this sad time...

 

[fieryred33143]

First off sap, I''m really sorry about your situation.

My father was diagnosed with cancer when he was around 30-33 (don''t remember when exactly). He started chemo and supposedly he was cured by 35. We moved to FL and when he was here, he started getting sick again but he refused to go to the hospital. My mom finally convinced him and it turns out that he still had cancer and this time there wasn''t much he could do. The doctors told him he could do chemo to prolong his life but it wouldn''t save him. My dad decided against the chemo. He said that those 2-3 years of doing chemo made him miss out on just spending time with his family. He missed us growing up, missed just being home. It was a hard decision for him to make and a hard one for everyone to accept.

The weeks before he passed away were really great weeks. My brother''s and my mother''s birthdays were the week he passed. We had a huge party for their birthdays and although he couldn''t dance or anything like that, he did hang out with us in the living room and he was genuinely happy to see everyone else having a great time. And when he passed, it wasn''t in a hospital hooked up to machines after radiation. It was in his bedroom surrounded by the whole family.

I guess what I''m trying to say is that while its hard to accept that he doesn''t want chemo anymore (especially knowing that this decision will eventually lead to his death) I would just take this time to enjoy him and celebrate the life he has left.

Lots of hugs to you and your family during this rough time.

 

[phoenixgirl]

I''m sooo sorry you''re going through this.

My situation was a little different but there are some parallels. My father had a stroke three years ago as a result of an undiagnosed arrhythmia which led to partial vision loss and then was diagnosed with prostate cancer a year and a half ago. The prostate cancer wasn''t going to kill him any time soon, but he was sort of in between the "you''re so young we should treat it aggressively" and "you''re so old something else will get you first" categories, and making the decision of what to do about treatment was really hard on him. The treatment he did choose had a lot of unpleasant side effects like impotence and incontinence. He also injured a ligament in his leg which he refused to have operated on because he was afraid to lose the ability to jog for the six months recovery time but which meant he had a rather pronounced limp. I share that last example just to show how scared I think my dad was of losing his quality of life. He chose the limp over giving up an activity that was keeping him in shape.

Long story short, he unexpectedly took his own life last year. We knew he was depressed over his various conditions but it was just a complete and total shock. The interesting thing to me was how many of his friends said things along the lines of how they really respected what he had done and how they wondered if they''d have the "courage" to do it given the same circumstances. These were the kind of uncensored things they said to us as they were still in shock, but I think they were revealing a fear that many people have as they get older. I think that as a young healthy person, you really can''t imagine what it is like to face losing your quality of life. I desperately wish my dad had been able to deal with his conditions and be happy, but another part of me understands in a way too. He had seen his own father die at a very similar age from cancer and I think he felt that all of these things were portentous of the end of life as he knew it.

In your case, it doesn''t sound like further treatment would do anything other than delay the inevitable for your dad. It will be maybe the hardest thing you''ll ever have to do, but I do agree with the other posters who say to look at is giving him a gift and respecting his final wishes. Your dad certainly wouldn''t want you to be full of regret over his decision. His decision is about affirming life and I''m sure he wants you to feel the same way about it. Despite the awful way my dad left us and the stigma associated with it, I know that I am a whole person. My parents raised me in love to be strong, independent person, and I honor my dad''s memory by not letting the way his life ended affect the way I live my life today or remember the 28 years he was with me.

 

[HollyS]

I''m very sorry that you are going through this with your family.

It''s a very difficult thing to do . . . allowing a loved one, an adult with their own rights, to decide to end treatment for a condition that will eventually be terminal. But you must allow him to do as he wishes. He should speak with his clergy, maybe, not just his doctors, and if everyone is convinced that he is perfectly capable of making this decision for himself, then you must support his decision.

I''ve been through this with friends and family. You must let them go on their terms.

In June, I lost a very close friend to a brain tumor. She had been through many forms of cancer, for many years, but this time she was unwilling to fight. She called hospice, had her family come to her, and she asked all of her friends to visit her at home, while she lay in a hospital bed in her living room. She had final goodbyes with everyone she loved, she sang hymns and prayed with friends and family, she listened to music she loved, had her animals around her, and she left this world peacefully just a couple of weeks after saying "No more." It was a blessing for her family to have that time with her, and to know that they would be there with her as she left them.

Making a decision this important about continuing health care is the first step in saying good-bye his way. We should all be so lucky to be able to dictate the terms of our passing. I can''t think of a better way to die than that.

 

[sparklyheart]

I''m so sorry you and your family are going through this. This is such a difficult situation and it leads to so many struggles in families so I hope you guys can work together to come to a decision everyone is at peace with.

I have to agree with others that this is about HIM. Of course you guys want him in your life but do you want him in your life but where do his wants and needs come into play? I doubt he has any desire to leave his entire family behind but he probably does want to stop being sick and just be done with his illness. Chemo most likely will just delay the inevitable and make it a lot worse along the way.. And all for what? So the doctor can come tell you his tumor shrunk 1cm or something else so trivial in the big picture? I disagree with what you say about having to "live with" the decision to not do chemo. What if doing chemo made him more sick and led to more complications? How about if you think about it as "living with" the decision to give your father his wish and let him live the rest of his life in peace, with his supportive family by his side? Hospice would probably be really good for your family so you can all gain a greater appreciation for his wishes and the wonderful life he still has left.

Thoughts and prayers to your entire family during this time...

 

[ksinger]

So very sorry that you are going through this. Must be something in the water. (There has been much death swirling near to me of late - 4 deaths and one good friend just diagnosed with inoperable metastatic lung cancer, hence the comment)

I recently lost my mother after a 2 and a half year battle with bulbar ALS. She steadfastly refused a feeding tube, even though her ability to speak and swallow was the first thing to fail. I''m sure many here can imagine, or have experienced, watching someone you love try so hard to eat, but be mostly unable and to slowly, slowly starve to death before your eyes. Hardest thing I''ve ever done, accepting her decision and then watching her stubborn will allow it unfold without a whimper.

All I can say, is it absolutely HIS trip and no one else''s at this point, and you''re simply there as support on the way out. I''m sure you already know this - your initial post indicates you do. You also must respect his decision if for no other reason that he is not a child and knows what he is doing. I also sometimes think the thing we truly rail against, and why we fight SO hard, is that we realize that in time, it is US in that situation. That''s the kicker.

My suggestion for your eventual peace, which will likely not come to you while he is leaving, but later, maybe in fits and starts - is that you do the best by him while he is alive. At some point it will really sink in that there was nothing you could DO to avert death, and you will be at peace with that. What might get you is guilt unexpectedly welling up that you might have done more to be with him, give him what he wanted, etc, while he was alive. I''ve been dealing with that. My family and friends assure me that I''m being silly, and perhaps I am. But I navigated the entire process mostly alone, since I am an only child and had no family to help, and it was brutally hard to work and do all the things I needed and wanted to do for her. (My beautiful man showed up to save me just in the nick of time. I''m not sure how much longer I could have done it totally alone without needing a rubber room. He helped for that last year, bless him forever!) You are so blessed to have family right now, and I''m certain your mother needs you desperately. Be there for him (and her), and let him go with grace.

You''ll and your family will be in my thoughts.

 

[lulu]

Sap, I was a hospice volunteer in Mi for several years. What state are you in? Here you typically qualify for hospice if your diagnosis is less than 6 months. My mom died in the hospital and I always wished she could have died at home. That''s why I became a volunteer.

 

[SeaStar]

Hi there. First I wanted to say I''m so sorry you''re going through this. I worked on an oncology floor that cared primarily for patients with brain cancer and most of what we saw were astrocytomas/gliomablastomas. These patients suffer tremendously and unfortunately brain cancer is one area where there is still much research to be done. From a nursing perspective I can understand why he is choosing not to continue with chemotherapy. Chemo that has to cross the blood brain barrier causes so much nausea, vertigo, loss of balance and coordination that it really diminishes quality of life. Often these patients permanently lose muscle tone in one or both sides of their body and have to wear an eye patch to help with double vision. It is such a horrible, debilitating illness for everyone involved, and I''m sure it can''t be easy for him or for you and your family to watch him go through this. Families are usually caught between wanting to honor what their family member wants and being scared to death of losing them, and the worst part is knowing there is no cure. If he were to go through with another round of chemotherapy, it may prolong the time he''s on earth but there''s no guarantee that time will be spent with him walking, talking, recognizable as the father you know and love. I don''t know where your family is with grieving, but the only thing that really helps is time and just being together. Just enjoy whatever time you have left together. Make sure he eats his favorite foods, has all of the things that are a comfort to him. Do you have family counseling? Do you have a pastor that comes by to talk? Anybody that can help? Has he had a palliative care/hospice consult?

My dad died in June of this year and I was his healthcare proxy. I had to make the decision to take him off life support because my mom couldn''t. It was the hardest and easiest decision I''ve ever had to make. My dad had made his wishes clear to all of us some time ago, but we were all hoping and praying he would come through and if we just gave it a little more time and a little more time after that maybe he would pull through...though as a nurse I knew all too well he had less than a 1% chance of ever walking out those ICU doors. Sometimes I still look back and think "what if" but I have to push those to the back of my mind because my dad told me with his own words what quality of life meant to him. I know that he''s in heaven right now making homemade cavatappi with my grandfather and great grandparents, playing cards and smoking cigars, happier than ever, free of pain and suffering...and that''s more than his body could ever have given him here on earth.

I really feel for you OP. Cancer is a horrible disease and there are few words of comfort that are going to help you right now. I think you need to listen to your dad. He is letting you know he''s had enough. He put up a hell of a fight. From a medical standpoint I would call 3 brain surgeries and many rounds of chemo and radiation everything you could possibly do, when you look back you can rest assured nothing was left undone. Know that all of you are grieving and that you will all be in different stages of grief at different times. You are going to need each other in these coming months. When it comes to our loved ones we will always be selfish. It''s human nature. No one wants to lose a loved one, and it''s easy to stand on the outside continuing to yell "FIGHT, DAMMIT, FIGHT!" But your dad is waving the white flag, it''s time to let him if that''s what he wants to do. I would sit down with case management, palliative care, and his oncologist for a meeting to discuss continunity of care. Your dad needs to feel a littel control, this disease robs you of every bit of it. It is ultimately his decision to stop treatment but it can be a beautiful transition if everyone can get on the same page. I''ll be thinking of you and if you have any questions or just want to vent I''m here to listen.

 

[Dannielle]

FI's grandfather has cancer, and it is at the point that treatment in only prolonging the inevitable. He has been having chemo, however it makes him terribly sick, dehydrated and just miserable. He decided to stop all treatments- he would rather have a few good months where he can enjoy his time than one year spent being sick, dizzy and miserable.

I know that this is hard (I lost my Mother to a brain tumour), but it is his decision and the best thing you can do for him is love him and respect his decision. You, your father and your family will be in my prayers.

 

[KimberlyH]

Sap, it is difficult to feel powerless, and natural to want the person you love to be here for as long as possible. I''ve been through this scenario with several people in my life (an uncle, grandfather, my mother-in-law, who are now all deceased, and now my grandmother who was just taken off all meds last week and is beginning hospice today). I understand the longing you feel. I also am a firm believer that when a person no longer feels that they are living, but simply subsisting that letting go is the best thing to do, for all involved. Find ways to enjoy the time you all have left together. Spend as much time together as possible and make great memories of your last days with him. Let him know you support his choice (even if you don''t quite understand it). You''ll find peace in spending his last days as a family unit, not disagreeing with him but loving him and honoring his wishes.

 

[VRBeauty]

Sap, you''ve received such great input here. I hope it makes it a little bit easier for you to accept your father''s decision. I know how brutal brain cancer can be: two people I know have died to brain cancer in the past 10 years, both after fairly short battles with the disease.

I remember reading a book about a celebrity''s death to breast cancer, written by her husband. What saddened me was that they fought the disease to the bitter end, trying one treatment after another, and in doing so it seemed like they gave up the chance to really say goodbye to each other, of for her to accept the goodbyes of other people who loved her. I''m fully aware that reading some book does not give me the whole story, and I certainly don''t want to judge anyone for decisions they make under these terrible circumstances. All I''m saying is that accepting the inevitability of death in a situation like this gives you opportunities that might not be obvious when so much energy is put into fighting it, and dealing with the side-effects of the chemotherapy or other treatments.

One of the people I referred to earlier was the director of a community chorus I used to sing with. He was well-known in choral circles, both locally and nationally. At one point during his illness, one of the choir members mused about what a shame it is that people can''t hear the wonderful things that are said about them at their funerals... and almost immediately, we started planning a celebration of the director''s life, to be held while he could still enjoy it. It was held a month or two later, and it was a wonderful celebration! His family was there as were one or two hundred friends and admirers. Musicians he had helped over the years attended or sent letters or videotapes to be shared at the celebration. People who had been in his choirs sung one of the many pieces that had been written for and dedicated to him over the years. He was no longer able to talk much at that point, buy he was able to understand what was going on and clearly appreciated it.

My point is simply that accepting your father''s decision and acknowledging the likely outcome will give you opportunities to share with him that could get lost if the focus is on the fight.

I''m sorry you and your parents are having to face these decisions.

 

[UCLABelle]

I have nothing to say except that your family and father are in my prayers...I cannot even imagine what you are going through.

 

[FrekeChild]

I''m going to say this:

Quality not quantity.

And when they say they are done, they are done. DO NOT try to take that away from him. You will think about the last weeks of his life for the rest of your life. Living with the end of his life, no matter how good or bad is something you''re going to have to do. And you''re going to keep reliving it and questioning everything you did, said, everything. Either you let him die on his terms and with his decision or you make a decision for him that he DID NOT want you guys to make.

My thoughts are with you.

 

[packrat]

I''m so sorry Sap, that you''re all going through this. I agree with the others, that it''s best to let him make the decision for himself, and then abide by it. My thoughts and prayers are with you all.

 

[kama_s]

Sap, I don''t have much to add, just wanted to say how sorry I am to hear what you and your family are going through right now. Your parents are so lucky to have such a wonderful daughter. Personally, I would fully respect your father''s decision even though it would absolutely tear me apart. That said, I would know in my heart that I did what made him happy.

My thoughts are with you and your family. *hugs*

 

[sap483]

Thank you all for taking the time to write out such thoughful responses. I will come back and respond to you all individually, as your thoughts and stories have really touched me.

I spent the weekend with my Dad, hence my lack of response these past few days. I''ve been going up there just about every weekend since he got diagnosed back in 2008, trying to make the most of the time we have left together.
I told him that I fully supported him, no matter what decision he makes. It was very hard to say, but I think it meant a lot to him to know that we would let him choose.

He told my mom on Friday that he was tired of being a burden to us. So I also tried to make it clear to him that he has never been and never could be a burden. I really hope that he is not making this decision based on his thinking that he has become a burden to his family. I support him if it''s based on his being tired of the suffering, that I can understand. It would really pain me though to think that he stopped fighting because he thought that would be the best for us. I have asked my siblings to also talk to him, and let him know that he is not a burden.