How to tell your mom it may be time to stop chemo?

[SpEdtacular, MSN, RN, EMT-P]

Hospice is a wonderful thing and dealing with these tragic situations is what they do. I know you said you think your mom will equate hospice to giving up but perhaps if she spoke with someone from hospice they could explain what they do and help her better understand their purpose. Don't let her cheat herself out of enjoying the precious time she has left, make sure she understands what being in hospice really means. I only say this because I have seen first hand how amazing hospice care is for the patient as well as the family. My heart goes out to you and I'm sorry you have to make such difficult choices.

[jjjoy, LPN]

My mom's onc had confidently discussed with us how treatment would progress over the next several months. And then there'd be a scan to see how the treatment was working. If it wasn't working? Well, then we'd consider our options again then. Three weeks of draining radiation treatment later, my mom slipped into a coma. She passed away a week later. The onc's comment was something along the lines of "Well, it wasn't unexpected."

Anyway, it's also your right, as a daughter, to talk to your mom about quality of life questions, even at the risk of upsetting her. After all, she also might be relieved if you bring it up. But it's your right to decide not to talk to her about those questions as well. If your mom resists addressing those questions, that's her right, too.

May you have peace during this time of hardship.

[nebrgirl]

My prayers are with you. I went through a similar thing with my sister who was an optimist until the end (she is probably still an optimist). Obviously every Doc is different, and while her oncoligist was very busy and didn't always return calls right away, he did return them, and make time for a "family conference" without my sister to discuss the realities of the situation. He was a great liason between us....at the end he told my sister we needed to quit treatment until she was stronger...which he and we knew was not ment to be, but it kept my sister from feeling like a quiter... Again God Bless.

[LouisVRN, RN]

I'm so sorry you are going through this. My dad was diagnosed with Lung Cancer in Sept 2 years ago and passed away in March of that year. At the end when medically I knew that he was not going to have any of quality of life left my mom and sister kept talking about "When dad comes home...(he had a stroke and a bleed in his brain) the nurses kept talking to my mom about hospice and she kept saying "Oh I don't think we are to that point yet". Eventually I just had to tell my mom and sister to think about what dad would want, not what they wanted. We all wanted everything to be okay and dad to get better and come home but it just wasn't meant to be at that point. Dad had made it very clear he wanted to be a DNR and once it became about what dad wanted decisions got a lot easier. Maybe just start the conversation with "Mom I want to talk about what you want out of the next few months."

[CBsMommy]

I think you got some great advice already. Just wanted to say that I will keep you and your family in my prayers.

[cav5]

My sister (who was 36) died of lung cancer about 5 years ago. Non-smoker with three children ages 16 ,14, and 6. I am the only medical person in my family and I know exactly how you feel (not exactly, but close). As a former ICU nurse I swore that my family wouldn't have to go through the needless suffering I saw on a daily basis when I knew the outcome was going to be the same-yet I was a coward. I did advocate for the no code because on the first day home (I live overseas) the nurse told me frankly he thought he had killed my sister when he gave her chemo the previous night. But, she somehow managed to survive the night. Some of me wants to always believe that she had the right to choose as much treatment as she could stand (and more, in some cases) because every individual has that right. However, the sister and nurse (because we can't stop being that, we can't go back) knows how greatly she suffered for a hope that just wasn't there. She told the hospice nurse she was healed because she had woken up from her coma and they had let her go home-we all know why they let her go home. The hospice nurse looked at me....and I froze. What should I have done? I don't know. Love her, love you, and let her live and die as she wishes. If they wish for chemo then we must give them that. If they wish for false hope then we must give them that. If they wish for palliative care then we must give them that. Finally, if they truly wish for the truth then we must give them that. It doesn't make our heart break any less though...sometimes knowledge is not power.. I pray for you and know that you are not alone. Take care of yourself, those babies, and her. I am so sorry for this time in your life. You are first her daughter. Be that and the nurses will take care of the rest-god willing-just like you do for the other mother's and sister's and children of the world.

[jones.rn]

I'm sorRy that you are losing your mom. I'm an oncology nurse, so is my mom, and I think it would be very hard on both of us to get a cancer diagnosis.

Remind your mom and maybe yourself that Palliative care is not Hospice. You can still receive treatment. They will just ensure that you are more comfortable in the process. It really sounds like, in my humble opinion, that you should ask your onc for a palliative care consult. Remember, this md works for you and your family. If you want him to sit and talk it is his responsibility. :)

Many hugs and prayers for you during this time. :)

[astethescope&aplan]

hey,

i've been where you are, the difference i was much younger i was 21 and im 25 now my mother had cancer twice both time she had serious complications from ulcerative colitis, to extremely high ammonia levels, fistulas, gall stones form the rapid weight lost. there was so much. i was just there trying to help... i come from a very baptist back ground and we were firm believers that God was gonna fix it and heal her. in the process of waiting for our miracle she did several chemo and radiation and other drugs to treat her other illnesses . in short her quality of life was severely impaired . i have 3 younger brothers that she didnt get to see much because she didnt want them to have that picture of her in their head. she wasnt able to walk, was always cold and in pain with no appetite. Had we faced reality and dealt with it, my mother could have had a much more fulfilling last months. I am not saying that you are not dealing because obviously you are and i commend you for being so brave. Now its time to finish the assignment, if you really feel in your heart that Chemo is not working from a medical stand point, please tell her to stop it immediately. Enjoy your mother laugh... sing... tell stories, be silly make maccaronni necklaces with your kids, have all the holidays in one month, because you do not get to have this time back. Take advantage i urge you

peace and blessing

Dominique

[Caffeine_IV]

I'm very sorry for what you are going through and pray for your and your families strength during that time.

I very much agree with cav5 said regarding to "let them live and die as they wish." Some people are NEVER ready for hospice and we have to learn to be ok with that.

If your mom wishes to open up to you about her fears/feelings then let her. You have to meet her where she is and enjoy the time that you have. ((HUGS)).

[cowspotzchic]

Thank you for all these great answers and personal stories. I have read each one. It helps so much to have others' view and experience. I definitely like the "letting her live and die as she wishes." It is my hope that she will want to stop chemo eventually, but that may be my hope and not hers. I have to remember to let her live her life how she wants it, not how I think she needs to even if I think it may be best for her.

I do want to call her onc this coming week- maybe she can just do an after hours phone call with me to discuss a few things. Maybe she can bring up the palliative care talk again too by asking her if she is ready to stop treatment. My mom has another CT scan in July to assess the progress. The onc was telling her last time that the FOLFIRI is basically the last thing there is to try. I talked to my dad though, and I don't think my mom will ever go on hospice because she doesn't want to, and he doesn't want her to either b/c he doesn't know what he would do without her. Like going into hospice makes a difference whether she will die or not...

I know there is no way to tell how much time she has left, but I feel like a few months is pretty much spot on. She's sleeping or just lying there with her eyes closed 99 percent of the time, not initiating conversation, eating mostly liquids like applesauce, yogurt or pudding. She's also seeming to be evaluating her life more, talking about what should have been done/ what shouldn't have been done. Just things I think are signs of the process for her. I guess the best words are "que sera, sera"

[nurseprnRN, BSN, RN]

Best advice I ever had was from a hospice nurse, who said she always told them straight out that hospice was NOT about dying, it was about LIVING.

She said, "We aren't sad, we aren't depressing, we don't wear black unless it makes us look a lot thinner," and paused for the laugh that always came after that, because she was a little pudgy (and never wore black). She told them that people sometimes "flunked" hospice, because they no longer met the criteria for it (although they could always come back without delay or penalty when the time came), or stayed on service for years.

She also then asked the patient what s/he would like to do now if s/he could do anything. If they said something like, "I've always wanted to go back to the old country one more time," or, "I want to see all my grandchildren again," she said, "How did your last chemo make you feel? Would you have been able to go then/ enjoy their company/have them see you like that?" And they always said, Hell, no, it was worse than the disease. Soon they came to think the previously unthinkable-- the treatment WAS worse, and if their lives were going to be shortened, how much better it would be to LIVE them, rather than suffer through treatment that didn't increase life expectancy and totally trashed quality of life. If they said, "I want to see my children grow up," she would say, "We all hope that could be. If we can't guarantee that, what else could you do?"

Hospice is so totally about comfort, laughter, saying goodbye in your own timeframe, letting your loved ones be cared for when you're gone (the Medicare hospice benefit extends to 13 months after the patient dies, to provide care to the survivors-- did she know that?), and giving a good example to the survivors on how to meet the inevitable with grace and courage. When they know it means NOT having to suffer, NOT having your kids remember you when you look like hell or that you didn't let them come (which is so much worse), NOT being zoned out on morphine so you don't know what's going on.... then they see it differently.

You can also get the 5 Wishes booklet and use it as a steppingstone to that conversation. So many of my patients have been glad of it.

[nurseprnRN, BSN, RN]

Oh, I totally forgot the PLISSIT model for patient counseling. This so applies here, even if you are doing it as a daughter and not a nurse:

P: Permission to talk about a difficult subject. So many people feel it's not safe to talk about sex/death/pain/abuse/whatever they fear, and are so very relieved to be given permission to talk about it with someone who identifies themselves as someone who is safe to talk to.

LI: Limited Information. Shorter bits of information to see if you're on the right track, or if they want more information.

SS: Specific Suggestions. This is where you give very detailed information (up to your level of expertise in the topic), again to demonstrate your ability to talk about the subject and to see if they need more.

IT: Intensive Therapy. Referral to a subject expert (in this case, the hospice liaison nurse who will come to the house and knows just how to handle these conversations).

Here's a definitive short article, citation in the middle.He's talking about sexual topics, but there are general ones below and it applies to any area.Obviously "sign of recovery" doesn't apply in terminal disease, but you could substitute "readiness to discuss end-of-life issues" for that.

PLISSIT Model of Intervention

PLISSIT is an acronym for four levels of intervention that were developed by psychologist Dr Jack Anon: permission, limited information, specific suggestions, and intensive therapy.12



Permission, the most basic and general level of intervention, allows the patient to express concerns in this area. Patients are reassured that their feelings are normal, acceptable, and a sign of recovery.2 



Limited information relates to patient concerns regarding the impact of their specific condition on sexual expression abilities and may consist of dispelling myths.2 This level of intervention is often provided in a group setting, includes patients and their sexual partner (if desired), and offers factual information via pamphlets, handouts, and resource lists.2 



Specific suggestions are aimed at solving an individual patient's problem and requires advanced knowledge and skill, but may be within the realm of (your) service provision. A detailed sexual history is obtained, specific problem(s) identified, and goals collaboratively established that address improved function in the targeted area.2 Intervention approaches may include problem solving, education, and compensatory strategies. 

The highest level, intensive therapy, requires formal training and documented competence in sex therapy, sexuality counseling, or psychotherapy.2 This level of intervention is beyond the scope of typical rehabilitation intervention and indicates the need for referral to a specialist.

Annon JS. The PLISSIT model: a proposed conceptual scheme for the behavioral treatment of sexual problems. J Sex Educ Ther. 1976;2:1-15.

Examples of questions broaching the subject of sex (the "permission" level in the PLISSIT15 model)

Routine questioning

"I always ask whether patients are having any relationship or sexual problems. Your sexual health is an important part of your life. Sometimes an illness or medication can affect your sexuality. How has your relationship been going lately?"

Generalising

"People with chronic renal failure often experience sexual difficulties, such as loss of desire or problems with enjoyment. How have you been affected?"

Normalising

"When a woman receives a diagnosis of breast cancer it's normal for her to be concerned about how treatment might affect her sex life. What worries have you had?"

Using statistics

"Over 80% of men with peripheral vascular disease report problems with sex, such as difficulty gaining and keeping an erection. What changes have you noticed?"

Other open ended questions

"What kinds of sexual problems have you had?"

"What happens when you and your partner try to make love?"

"How is your health affecting your relationship?"