Telling family about a terminal illness

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Heaveniswaiting

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Hi…if you were just diagnosed with a terminal illness would you tell your family or keep it a secret until if things got bad and you didnt have much time?
 
I’d like to think I’d tell them. Gives them time to prepare for my death, both psychologically and financially.
 
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Yes. Loved ones have a right to know. And, they can’t help if they’re kept in the dark.
 
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This excerpt from Lying, by Sam Harris, may be illuminating:
My maternal grandmother died of cancer when my mother was sixteen. She had been suffering from metastatic melanoma for nearly a year, but her doctor had told her that she had arthritis. Her husband, my grandfather, knew her actual diagnosis but decided to maintain this deception as well.

After my grandmother’s condition deteriorated, and she was finally hospitalized, she confided to a nurse that she knew that she was dying. However, she imagined that she had been keeping this a secret from the rest of her family, her husband included. Needless to say, my mother and her younger brother were kept entirely in the dark. In their experience, their mother checked into the hospital for “arthritis” and never returned.

Think of all the opportunities for deepening love, compassion, forgiveness, and understanding that are forsaken by white lies of this kind. When we pretend not to know the truth, we must also pretend not to be motivated by it. This can force us to make choices that we would not otherwise make. Did my grandfather really have nothing to say to his wife in light of the fact that she would soon die? Did she really have nothing to say to her two children to help prepare them for their lives without her? These silences are lacerating. Wisdom remains unshared, promises unmade, and apologies unoffered. The opportunity to say something useful to the people we love soon disappears, never to return.
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Ive just been diagnosed with heart failure at age 34… i can still function and all but i really dont know if its the right thing to tell my family…i mean i dont want them the burden of my disease even their my family…so im not sure if i should keep it a secret until IF my condition gets worse even with treatment and if i may die. …
 
I am saddened to hear of your diagnosis. I pray for your healing and health.

You are concerned about burdening your family, but I think it will be much better for them, and you, if you tell them soon.

And I would think of soon as in days, not weeks. To a small extent, you can time it. For example, don’t tell your child about it on his birthday, or your husband just before an important meeting at work.
 
Terminal illness…I feel that the person diagnosed should have the right to tell their relatives or not to tell…I know it is important to love our family members and keep in touch, however, some choose not to “keep in touch”. I was a caregiver for my brother when he was diagnosed with terminal cancer. This was a very stressful time for me and received no support from my sister who lived outside of the country. If I was diagnosed with a terminal illness, I would not share the information with some relatives because they are not in contact with me now…no Birthday Cards, no Christmas Cards, no phone calls, no letters…What more evidence that they don’t care for me than this? Understand that I use to sent gifts, cards, letters to them until I realized that I never received a “thank you”! This is so sad cause I just have one sister and one nephew in my family and several cousins. I do have a wonderful Godmother, an elderly Aunt, who I love dearly and am in contact with, and I would share my illness with her. We are here for a short time…we have a free will…I do love all but don’t feel any love in return… 😪
 
The flip side of this coin is when the patient goes into denial and puts off getting treatment.

My mother did this. My father called to her attention a lump he saw on her breast, and told her to see the doctor about it.

Mama had a cruise scheduled that she didn’t want to miss out on. She went into denial, thinking that it was nothing more than one of those fatty fibroids that women get, which are completely harmless.

She lied to our Dad, saying she had been to the doctor and he had told her it was just a fibroid, and not to worry about it.

But – it kept growing and growing.

Mama went on her cruise, and when she came back, the tumor was larger. Dad finally figured out she hadn’t seen the doctor, at all.

That’s when he packed her into the car and personally drove her there. The doctor didn’t even have to do a thorough exam by that time. He knew what it was, and hospitalized her immediately.

By then, it had spread to her lymph nodes under her arm.

She thought she could get by not telling anyone, that it would just turn out to be nothing. Before a patient can consider whether or not to inform family members of a diagnosis, they must first get the diagnosis, and then accept the diagnosis and not deny it to him- or herself.

How many people do that? Go into denial and put off getting valuable and necessary treatment in time to really help themselves? I think this happens more often than we would like to think. Nobody likes being told they have cancer – or to even have someone suspect it. Pretty scary, and also inconvenient.
 
And then, the medical establishment has to take seriously the patient who is doing due diligence, and not refuse to authorize additional examinations when deemed prudent.

I’ve been told, after having my yearly mammograms, that I should follow them up with an MRI, because my breast tissue is very thick, and a mammogram alone could miss a tumor. Since my mother had breast cancer, that is prudent advice.

But, when I tried to get my physician to authorize an MRI, she copped a hostile attitude, saying that MRIs miss stuff, too, and my insurance won’t cover it. She thought I was being overly-reactive, even though there is a history of BC in my immediate family. I pointed this out to her – she scoffed it off.

I haven’t gone back to this physician, and I’m not sure I want to, although I have continued the yearly Mammograms, my most recent one being 3-D, which give a better view. So far, so good.

But how can I trust that some future doctor will take seriously my request should I wish to follow up in the future with an MRI? How do I know I won’t be greeted with hostility or just have it blown off?

I’ve said it before – the medical profession needs to clean up its act and stop being so arrogant and condescending, and treating people like five-year-olds.
 
For better or worse, I would tell, pro’ly by putting it on my FB page, after first tipping off my sons via PMs.

D
 
I’m sorry for your diagnosis… do you have expectations of how long you have or what the prognosis is?

I ask because unlike other posters, I would not want to tell people right away.

My own husband… of course. But extended family… not until I started to really go downhill. I’d want everyone to treat me normal. Once they know you have a terminal illness it changes things. I would obviously tell them at SOME point but nope - I wouldn’t tell people until it started to debilitate me.

This is kind of the personality of our whole huge extended family though. Aunts, Uncles, Grandparents, siblings… we are all kind of the same mind. Our family has had numerous health issues but generally we all buck up go on with life… just spreading the news near the end when we know life will be changing really quick.
 
I grew up with family that talked around things, never actually saying what they meant. I’m one of those people that does not pick up social cues. When my father…in another state across the country…had heart surgery, my step mother kept putting on this cheery outlook of …its minor…he’ll do great. The doctor is very optimistic. After the surgery…he’s doing pretty well. He’s had some arrhythmia but they’re giving him medicine. I finally called the head nurse at the nursing station. My father had coded twice. He’s not responding well…I was on the next flight out there. He dies several days later. I was lucky that when I arrived, he was still conscious as that changed the next day.

I’m very blunt with my family. If I had a terminal diagnosis, I’d not only tell them everything I know, I’d also tell them that if they start changing how they treat me, I’ll give them a kick in the rear.

The point is, if the family would WANT to know, they should be told. Yes, you have the right to keep silent but I just wouldn’t do it. If you are worried about being pitied (I would) then just make sure they don’t…don’t tolerate that behavior. But, both they and I have things we want and need to say to each other. I feel that everyone should be given that opportunity.
 
If I had family members I was close to - living in the same household or just someone I was in frequent contact with - I would tell them. But if it was estranged family members who don’t contact me anyway, no I wouldn’t.
 
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