Topic: When to choose Hospice?

I'm presuming there is no right or wrong answer but I was hoping that people could share their stories on when they chose hospice care rather than going to doctors/hospitals anymore.

It's such a hard choice.  From the get-go, my dad decided that he didn't want to know all the specifics and that he wanted us to make the medical decisions for him.  He had the upmost faith in our care for him and literally put his life in our hands.

The doctors are telling us that he is in very bad shape but can't tell us how long.  In fact, nobody is willing to give any estimate except one doctor said "no, weeks... not months" so that's all we really have to go on.  Based on that, we are thinking hospice, but the hard part is that dad still looks pretty good considering all he is dealing with.  He says his pain level is at 2-3 most of the time.  He is still able to eat/drink.  He enjoys the company of people.  He is talking about wanting to do exercises and eat more when he gets out of the hospital so that he can get stronger.

He simply doesn't seem like someone who is going to pass soon although the labs and symptoms (ascites, black stool, jaundice) would indicate otherwise.

How do you make the decision that you no longer want to extend your own father's life and that you are seemingly expediting his death, albeit in a comfortable manner?

Thanks,
Richard

Re: When to choose Hospice?

Hi,
The hospice John and I had, we had to have our Dr. call and set up the first meeting. The Dr. knew John didn't have much time and our hospice only took people who had less than 6 months left.
Talk to your Dr. or find a hospice near you and call.
It was the best decision for us. The hospice literally took over John's care, ordered all his meds, came at least once aweek to take vitals.
They were the most loving, careing nurses and Drs. we ever met.
They not only help the patient , they help the family members deal with their sorrow and fear.
They are truely a Godsend.
Good luck and God Bless,
Charlene

3 (edited by marions Sat, 22 Dec 2007 22:25:51)

Re: When to choose Hospice?

Dear Richard,

This is what I believe:  Palliative care encompasses alot of territory.  Choosing the direction is a very personal issue; demanding some thorough thoughts and the evaluation of acquired information.

We are fortunate, in this country, to have Hospice care available to us.  A phone conversation with the organization will put your mind at ease, as they are trained to deal with palliative care patients and their families and all possible questions arising in a situation, such as yours.  Also, remember, not infrequently has Hospice released patients from their care when at times, there was an improvement in the patient

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: When to choose Hospice?

Hi Richard,  Like Marion mentioned it'is a personal choice.  Basically what you described would indicate not much time left.  Basically what does Dad want?  Him saying he would eat more and exercise more once he gets home ,kinda gives me the sense that he is scared and wants someone with him.  Does he want to be at home or at a hospice center?  You can with help from the hospice choose to do either one or even both.  I guess One thing to ask yourself, is the family prepared and or have the ability to provide care at home when Hospice is not there.  Hospice will certainly help you with the basics.  As time grows closer there is a chance that he may become quite delirious(sp), he might try to get up and wonder around and and injure himself.  Bottom line Richard if you want to try at home for a few days and then make a decsion.  Alot of people choose to pass on at home because of high cost.  Social Security only contributes a whopping $268.00 approimately towards funeral expenses.  Others choose hospice center as they could not deal with living in the house after a loved one has died.  Then again it just may be to emotionally upsetting not to be there when the time comes.  Have you all made a checklist of who to call and when.   Contacting a funeral home in advance is best. I made all my parents arrangements in advance.  My Dad passed on a couple years ago and all went just fine.  Richard I'll stop ramblin and say it's really up to your personal choice and what you think is best as you mentioned your Dad is leaving it up to you and the family.You can't go wrong Richard you can only do your best as a caring and loving son.  At this stage I personally would think it isn't a matter of extending or shortening his life; It is in God's hands now Richard and you cannot and should not entertwine your descision will any guilt what -so-ever.  Make him comfortable and love him dearly just as you continue to do.
Richard, Lots of hugs and loving support has been sent your way,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: When to choose Hospice?

Dear Richard -- Not knowing exactly the extent of your fahter's condition at this time, it seems if he feels well and has the thoughts of exercising, etc.. or at least giving all this a try once he is home, let him. If there is interference of having visiting nurses, etc. going on around him when he doesn't need them yet, it seems the freedom to be himself, if he so desires, might be beneficial to him. If, however, he is apprehensive and needs hospice care with meds and everything, he will undoubtedly show signs when that need arises. I know it's a tough decision to make at this time.
God bless you with His love and care. ~~  Jean

Re: When to choose Hospice?

Is there a possibility of the doctor or social worker inviting your dad to meet with hospice workers or learn about hospice "in case he needs it later on although he doesn't seem to need it now."  Could one of these professionals tell him/you "I advise all patients to talk to someone in hospice before they ever need their services."  Maybe this would open a door if your dad sees the hospice connection as not focused on his particular situation but part of the dr's protocol.  Then you could said that you agree as it would help you understand what hospice does and doesn't do and who to call IF his health turned worse "later on." 

My husband is in a similar situation...but---he is told by doctors "not weeks or months but maybe a year or a few."  But my dh just keeps wanting to know about hospice and death with dignity laws...has a hard time enjoying the here and now and wants to know  all the details of the eventual.  My husband is eating well and not in pain...his recent scans didn't show anything new.  So people sure have their differing ways of dealing with this.  As much as possible, let your dad have his view of things...but do get all the info you can.

Over Thanksgiving we had some friends over and they brough along a sister who is a hopsice director in another city.  She invited my dh into some helpful conversation...she advised to get to know palliative care and hospice people before there is an acute situation. 

I feel for you and hope you have found some effective ways to deal with this dilemma.

Re: When to choose Hospice?

Richard,
We spoke to hospice and had initially set everything up with them when Dad was told he only had months to live. I think it is easier on everyone, if it is done and in place before you actually need the services. Your Family and Dad will know ahead of time what Hospice is all about and what they can do and provide in your time of need.

Thinking of You in this Most Painful Time.
Hugs Lisa

Re: When to choose Hospice?

Richard,

I will be faced with the same situation for myself at some point.  I don't know what the catalyst will be for deciding to go for hospice.  But, and maybe it's because I am such a control freak, I have done a few things in preparation.  I have made all the arrangements for my funeral including paying for it out of a small life insurance policy I took out years ago specifically for that purpose.  I also did the research on the different hospices where I live and what is available.  If at all possible I want to be at home but I will have to see how things pan out.  Remember you can receive hospice services without actually residing in hospice.  When your dad and his doctor decide that active treatment is no longer an option and palliative care is what he should be receiving, then he should look into hospice services.  Then, when and if he comes to the point where he can no longer get the care he needs at home, whether by family members or home health aides, then that is the time to look into moving into a hospice residence.  I urge you to call the hospice agency (ies) where you live and discuss what options your dad may have.  Most insurance companies include hospice in their coverage including Medicare.

I wish you luck in your decision making and hope that you and your family get the comfort from Hospice I have seen so many get.

Barb