My mother was diagnosed with cancer. Any advice on care decisions?

Joann; most of us here, myself included, feel that we waited too long to contact hospice.

Hospice does NOT mean that death is imminent; it means that without treatment, your mother's disease is life-limiting.

Calling Hospice (and she has to be referred by a doctor) means you get to meet with several hospice providers in your area and perhaps get some insight into what services each offers, and what their "style" is.

You DON'T want to be searching around for a good hospice provider when your mother is close to death.

Get this process started this week; you'll be glad that you investigated them BEFORE they were needed.

I am so sorry to hear that your Mom has been diagnosed with cancer. We need more background information before we can give more constructive and appropriate suggestions. How old is your mother? What type of cancer has she been diagnosed with?

While I understand why your sisters are saying "No doctors", just because your Mom has chosen not to be treated for the cancer, does not mean that she should not see a doctor. I agree that she should continue to see her heart doctor. I also agree that it is time for as least an evaluation by hospice. If it is not time yet for hospice to be part of your Mom's treatment plan, then hospice will tell you so.

Joann
Please read the book “Being Mortal: Medicine and what matters in the end” by Atul Gawande. You can listen to or read interviews on line to introduce you to Dr Gawande. I listened to one yesterday on Being.org that was really good. You can google his five questions that helps start conversations with our loved ones.
I would not fight your sister on checking into hospice. If it’s not appropriate, hospice won’t be ordered. If it is, it’s a service that your mother should have the benefit of.
Being on hospice doesn’t mean your mom can’t see other doctors.
You and sister are understandably upset at hearing mom’s diagnosis.
Take a minute and decide to work together. Your Mom will benefit from your cooperating with one another and being respectful of one another’s opinions.
I have two loved ones on hospice right now. I went to a wedding with one about nine months ago. It was the wedding of her only grandchild. She was on hospice then. I look forward to seeing her for her birthday next month.
The other one has been on hospice about the same length of time. She was at our family reunion earlier this month. She goes with her daughter daily to deliver meals on wheels to others.
Hospice will allow your mom and you and your sister to focus on living the rest of her life and not focus on medical treatment alone.

It is never to early to contact hospice. They will send a team to your mom's residence to evaluate her and to give you their recommendations as to what hospice can or can't do for her. The hospice team will not necessarily advise against your mother's seeing her heart doctor. My husband was under hospice care in the U.S. and continued taking medications his specialists had prescribed. You and your sister should be present when the hospice team visits your mom. You will be glad you involved hospice in your mom's care.

JoAnn, I’m so sorry to hear of your mom’s diagnoses. I wonder, is your sister mom’s caregiver? Is she a medical professional? Contacting hospice is not a decision you have to make on your own, and your sister should not make the decision on her own, either. Both of you should speak with Mom’s primary care doctor or her oncologist and ask. How does Mom feel about checking in with the cardiologist? My husband goes twice a year, so that’s not terribly often. You and your sister need to get on the same page regarding Mom, and her doctor can help.

Which of you and your sister has the medical proxy? It is best to share decision making whenever possible, of course, but in the end whomever is proxy has the final word. Better be able to back it up with facts, not emotions, though! Depending on the kind of cancer, your mother may need pain meds or other palliative measures. A doctor can help her understand the changes her body may be going through. This is NOT a small thing! I understand not wanting surgery and my doctors have been informed that I will pass on surgery. Has your Mom dealt with these things? Has she signed a Do-Not-Resuscitate form? She may not want to do these things, but they are important and should be done while someone is capable of understanding what they are signing. (They are important for you and your sister, too.)

I also want to recommend Atul Gawande's 'Being Mortal'. It should be required reading for all who have aging loved ones. Gawande is a well-respected surgeon where I live and is well known to the medical community. He does not write in a medically technical style but in an easy read kind of way. If you purchase the book, you can lend it to that sister when you are finished reading. It might help you to both be on the same page with plans for your mother.

Stay well yourself, give your mother a peaceful end of life -- and may it take a long time before she reaches that!

I’m so sorry for all you and your sister are facing. Each person’s experience is different, but my experience with specialists treating my parents is that each specialist has focused exclusively on their own area of “interest,” sometimes to the neglect of my parents as a whole. This has sometimes had a negative effect on my parents’ quality of life. After discussing it with my parents, I have now begun actively asking all docs to consider my parents quality of life rather than just length of life when making treatment decisions. One thing to consider, in addition to the good advice you have already gotten here, is that there are docs who will focus on palliative care, which can be important for the comfort of the person who has cancer. Working with this kind of doc may help improve your mother’s comfort even as she progresses on this difficult road. Sending you all best wishes for comfort and grace.

Agreeing with Kathy, above. My sister-in-law and mother-in-law were the ones who wouldn't call in hospice or palliative care in the case of my other sister-in-law's impending death. Although the oncologist made his opinion clear, I think, the family members were in denial. She could have been much more comfortable if they had sought appropriate help at an earlier point.

It is my understanding that when your mom receives hospice care, she can still see her cardiologist. On that subject, if she has a cardiac defibrillator, you should visit the cardiologist to have it "disarmed." You don't want it continually firing off when the time comes that she passes away. I would sign her up for hospice as soon as they determine that she is eligible. At the evaluation (or before) they can explain to you what is allowed and what isn't. Hospice will be able to manage her comfort level as she progresses through her illness. My mom received hospice care for three months; they were wonderful.

Another possibility (depending on how much you want to spend) is to hire an independent patient advocate who can figure out the options you have (see how many hospice organizations operate in your area and what their reviews are, etc) to take some of this burden off of you. If you find the right patient advocate, they will respect yours and mom's wishes while providing you lots of information about choices and ways to make the road ahead a bit smoother. Let me know if you have any questions about this. I am a Board Certified Patient Advocate. Most people aren't familiar with our profession. I'm not angling for a job, just trying to raise awareness.

Best of luck to you and your sister. I wish I had called Hospice sooner when my mom was in her last few months of ovarian cancer. The doctors don't want to admit defeat so they wouldn't even talk about the "H" word. However, when I was overwhelmed with care decisions I talked to the cancer hospital social worker, who said to call Hospice and they were very helpful in making Mom as comfortable as possible during her last two months all the while respecting her wish to remain home and in charge. As an only child, I couldn't have gotten through without them.