Would you want to know the truth?

[Caroline]

As I've posted elsewhere, my FIL is very, very sick with lung cancer. It's spread to his liver and they've discontinued chemo and radiation. He was told to go home and contact hospice, which the family has done. The Dr. didn't give him any timeline. She DID, however, tell the hospice worker that he had a couple of weeks or so, and hospice relayed to his wife and family. They have NOT relayed this piece of news to the patient.

I'm a third party to all of this so I make no judgement whatsoever and would never dream of offering advice or comment. My job, as I see it, is to run errands and hug SO when he cries about this. But I do have two aged parents myself and, as my 50th year approaches, I have come to an understanding that I just might be mortal myself.

So the question -- do you think you'd want to be told any and all information in this circumstance? Would you want an educated guess as to the time you had left, no matter how grim that guess might be?

 

[Texas Proud]

I want to know!!! nuff said...

My sister told me a story of someone she knew who knew someone... etc... you know third or fourth hand...

They sent him to a hospice.. while there, he said it was different than the 'other hospital'... one of the nurses told him this was a hospice.. and you come there to die.. he said Fcuk you.... I am not going to die and checked himself out.. recovered and lived a number more years.. just needed the right motivation I guess...

He probably knows if he is going into a hospice...

 

[Ed_The_Gypsy]

I want to know!!! nuff said...

I am with you, T-P. A man wants to know.

 

[Rich_by_the_Bay]

Caroline, I am very sorry for your family's pain.

In my experience (I deal with cancer patients), almost all patients want to know the facts. Those who feel it is best to withhold this often underestimate the patient's ability to handle it. I feel an ethical obligation to tell my patients all the relevant information with only very rare exceptions. It is almost always better if they know. Furthermore, the patient often does know, even when the family thinks otherwise. From your description, your FIL probably knows (at least vaguely) what hospice is, and that he is not receiving aggressive treatment and, unless he is impaired, he must know he is dying.

Having said that, I claim no ability to declare any approach "right" or "wrong" without being part of the situation (and usually it's hard even when I am involved). I have had families whose ethnic or cultural values preclude discussing impending death directly with a patient. This is very disconcerting all around. Timing is important, and I look for clues from patients as to how much they are able to digest at certain points in the course of their illness, offering to answer all their questions truthfully, but not necessarily answering questions they don't ask until the time is right.

So, it's very complicated and hard. As in most such things, communication is usually the key. Life unfolds.

 

[LOL!]

Yes, I would want to know. My father died of cancer and was in hospice care at home for a while. He was able to get his affairs in order and have the peace of mind that comes with knowing that my mom was taken care of. One of his biggest fears was that he would not have enough time to settle certain financial things. In the end, he had the time.

I have also seen where a family did not want to tell a matriarch that she had terminal pancreatic cancer. To me it was sad, since she was a nurse and I don't think she would be fooled for long. But to me that led to wasted time that would have been better spent getting ready to die.

 

[Dawg52]

If I knew my cancer had spread and I was told to hook up with hospice, I think I would know I didn't have much time left. Therefore I don't think I would have to actually hear a projected date of death. 

 

[cube_rat]

My condolences to you and your family. This is a truly sad situation.

I would like to know the approximate timeline, ONLY if I'm assured I will be rendered somewhat comatose when the time is near with increasing of drugs. I do not want experience nor would I like to see a loved one who's conscious through the dying process. There's no need to be aware, if there's an estimated timeframe for death.

 

[Martha]

I am with Dog52, I would want to know details of my health condition and that it is fatal and what the hospice was all about. But timelines? They are a guess anyway and I wouldn't want to know. If I did want to know, I would ask.

 

[Khan]

Yes!
As others said: so I could get everything in order.

An interesting family dynamic that I have observed (as a 3rd party) is where the family knows the patient is dying but doesn't communicate that to the patient, while the patient knows she is dying but doesn't want the family to know she knows; so no one can effectively reach acceptance and make arrangements; so everyone is involved in a denial scenario: dancing around the elephant in the room.

 

[Aaron]

I’d want to know, but there might come a time in my life when I wouldn’t care to hear an exact timeframe. 

My grandfather recently passed away after being in Hospice’s care at home for several weeks.  He was 88 and had cancer 10 years earlier, so he had already been through chemo, radiation, etc. and refused any treatment or diagnosis this time.  He just knew it was his time to go and seemed ready (even secretly told my dad what songs he wanted played at his funeral).  I don’t think he would have done anything differently if the doctors told him he only had a few weeks left, as he knew what Hospice was and why they get involved.

However, I think each case should be treated separately, depending on the patient. 

 

[kz]

A few months ago my best friend and I had this discussion. She has been fighting cancer for almost 10 yrs and it is progressing rapidly. She decided she did not want to know but her husband wanted the info. so when the time came she left the room and let her husband receive the news. Within the hr she asked him what the prognosis was and it isn't good. She will be gone by the end of the year if not sooner.

After a long cry with her she asked me what I would have done. I told her I'd want to know so that if I was given, say 30 days, on day 31 I would jump up and down, thumb my nose at the world and know I beat it at least for that day. It brought a smile to her face.

I gotta tell you, though, I hate this crappy cancer stuff. This will be the third young, vibrant friend/relative I've lost to this crap.

 

[Rich_by_the_Bay]

I gotta tell you, though, I hate this crappy cancer stuff. This will be the third young, vibrant friend/relative I've lost to this crap.

Yeah. It's rough.

Some of the nurses have taken to wearing buttons that say "Cancer Sucks." No argument from the patients.

 

[Nords]

We're all supposed to live our lives as though we're dying tomorrow, right?  So I'd immediately want to know everyone's best estimates of my lifespan.  If nothing else it'd give me a goal to focus my efforts on beating.  Why, think of all the annuities & insurance policies I might or might not purchase!

When I was on 90-day submarine patrols we'd occasionally get a message alerting the CO of a crewmember's family problem.  Spouse, kid, & parent emergencies weren't subject to discussion-- if we weren't at DEFCON THREE or higher then we'd try to get the shipmate home to help his family and we'd hope the same would be done as quickly for us.

The difficult decisions surrounded more "distant" relatives.  It would be an elderly grandparent at death's door or a best friend suffering from a fatal disease or a neighbor with a bad injury.  The CO would usually be informed that a HUMEVAC request might be forthcoming but that the well-meaning family had helpfully requested the crewmember not be informed "so that he wouldn't worry about it".

My confused thinking on those requests was clarified by a CO who would immediately share all the "Don't tell him!" info with the crewmember.  People believe in the power of prayer and they want to know everything right away so that they can feel that they're doing something to help, even if they might not be physically there to do so.  I'd want to know the same news about anyone who was important to me.

Here's another perspective on knowing the truth.  I remember how happy Marv was when his daughter was born and now I'm sorry that we've lost touch over the years.  The newspaper was taking the article to press when their daughter died suddenly last week.  I'm sure that Marv and his wife have said goodbye many times to their daughter, and they asked the paper to run the story as written to support other families dealing with cancer.

When our kid goes out the door to school in the morning, I make sure that I have my full attention on the moment.  I couldn't have it any other way.

 

[mickeyd]

So the question -- do you think you'd want to be told any and all information in this circumstance?  Would you want an educated guess as to the time you had left, no matter how grim that guess might be?  

Good topic Question.

Any adult in their right mind (or mild Alsheimers) has a right to know the score with all of the gory details. Who would you be protecting? The patient? Hell, he will be dead when it's all over and if he is the only one that is not in the know, something would be very wrong there. Very wrong!

The patient should be the one making decisions on his/her own care. How can you make a decision on your healthcare if you do not know the answer to the most important question?

 

[AltaRed]

I would want to know if I have months or weeks so that I could get my affairs in order at the appropriate pace. Beyond that, I would not. That is why I have a personal directive out there...with instructions what I want done when I can no longer make those decisions myself.

 

[Brat]

My condolences to you and your family as well.

I would want to know that my passing will likely happen soon because I want the opportunity to say goodbys, and I would also want my family's assurance that those I care about will be well looked after in my absence.  The assurance that I am loved would be important too.

There are ways to communicate the above without giving a specific time line, because the reality is that no one knows.

 

[Rich_by_the_Bay]

There are ways to communicate the above without giving a specific time line, because the reality is that no one knows.

That's a great point, Brat. The best is to complete your final "to do" list in advance, then enjoy the simple pleasures of life until the end. That level of simplicity is not easy to achieve but given good information early can only help, in my opinion.