Five Wishes

This topic contains 10 replies, has 7 voices, and was last updated by  blue skies 2 years, 6 months ago.

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February 16, 2012 at 9:38 am  #1714    

double trouble

I’m delighted to see a dedicated forum for these discussions. Thanks Dr. West

I’m about to schedule a consultation with my Oncologist (I may request a double time slot to allow enough time to be thorough) to go over the “Five Wishes” advance directive document that was given to me by the Hospice organization I’ve chosen to pre-register with. I already have a simple version of an advance directive and a designation of health care surrogate on file, but I feel that the Five Wishes document covers more bases. My Oncologist has agreed to help me fill out the document so that I can ask questions, and hear his opinions on the many scenarios that might occur. I’m very grateful that he is going to make himself available for this potentially very emotional conversation.

http://www.agingwithdignity.org/forms/5wishes.pdf

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

February 16, 2012 at 1:03 pm  #1715    

Dr Hensing

Hi Debra,

Thank you for posting the five wishes form. I have to admit, I have not seen this form before, but it looks like a very good tool to facilitate conversations between providers and their patients about wishes and treatment goals. I’m glad to year that you are going to work with your oncologist to fill it out (and that your oncologist is willing to take the time necessary to go through the questions…).

I appreciate you bringing this to everyone’s attention.

Dr. Hensing


Thomas Hensing, MD
Medical Oncologist, Clinical Associate Professor

Views expressed here represent my opinion, not those of GRACE, NorthShore University HealthSystem or the University of Chicago. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 16, 2012 at 8:09 pm  #1716    

Dr West

I think this is really terrific. It does two things very well:

1) Lowers the barrier to a constructive discussion about end of life wishes, which can be very difficult for both patients and doctors, while giving a structure

2) Provides a very user-friendly, understandable walk-through of the issues without being too simple.

It’s a very helpful tool.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 16, 2012 at 8:36 pm  #1717    

laya d.

What an awesome form, Debra,. . .Thank you for posting it here. . .

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 17, 2012 at 3:21 pm  #1725    

double trouble

Here is a quote from the Aging With Dignity website about Five Wishes:
http://www.agingwithdignity.org/index.php

“Five Wishes is used in all 50 states and in countries around the world. It meets the legal requirements for an advance directive in 42 states. In the other eight states your completed Five Wishes can be attached to your state‚Äôs required form. Five Wishes can be used in any part of the world as a helpful guide and documentation of your wishes.”

The states that require additional documents are Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas and Utah.

On Hospice: There is an independent Hospice facility located on the campus of the Mayo Clinic in Florida, where I am currently being treated. They are not affiliated with Mayo but Mayo donated the land to them. I was able to pre-register with them, and they will call once a month if I want them to even though I’m not currently in need of Hospice care. I registered ahead of time so that my family will just have to make a phone call, and the full range of services will become available. They already have all of the necessary information, minus Doctor’s orders. when death occurs Hospice makes all the necessary arrangements (transportation to the funeral home, notifying authorities, obtaining the death certificate.)

I also have a life insurance policy that will cover my cremation. The funeral home calls to make sure the funds are available, and when confirmed they go ahead and do what they do. The insurer sends out 2 checks, one to the funeral home, and the remaining balance goes to my beneficiary. And that’s that. One phone call. And my family won’t have to make any painful decisions.

These things were on my bucket list, and I feel so much better now that they are taken care of, even though these were issues my family didn’t want to talk about, and I didn’t want to think about. I feel like a huge weight was lifted off my shoulders. Now I can focus on living.

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

February 17, 2012 at 5:44 pm  #1726    

Dr Harman

Debra,

Thank you for posting this about the Five Wishes–I’ve been a bit slow on the forum uptake, sorry I am just seeing this! We really like using this as a more accessible advance directive. And wow, you say it all here: “I feel like a huge weight was lifted off my shoulders. Now I can focus on living.” That is the whole point of advance care planning!

-Dr. Harman


Stephanie Harman, MD
Medical Director, Palliative Care Program
Stanford University Medical Center

Views expressed here represent my opinion, not those of GRACE or Stanford University Medical Center. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

February 18, 2012 at 12:07 pm  #1735    

Jazz

Debra,

Thank you thank you for posting this – I’m adding this to my “Need to Know” file and sending it to my father, who is also undergoing tx for stage IV LC.

These are difficult issues to face. Kudos to you for having the courage and force-of-will to get it done. I’m hoping to get it done by giving myself a deadline…

~ Jazz


Non-smoker, Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Trial: 2cyc Carbo/Doce/Avastin + 2 w/Gem 8 – 12/06; Avastin maint. 1 – 4/07. Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial 2/12 -2/13. LL collapsed. 1/13 PET – new bone & adrenal mets. 4 cyc Carbo-Gem-Tarceva 5/13. Brain MRI 10/13 – clear. Lost Dad to LC 5/13.Anti-PDL1@Angeles Clinic?

February 18, 2012 at 2:50 pm  #1736    

double trouble

So good to “see” you Jazz!! I love the new avatar, and I hope things go well for you with the trial and the scan coming up. And if both you and your father feel more at ease facing these emotional issues because of this thread, then I have accomplished what I set out to do, which was start the dialog. Planning ahead for an inevitable future just makes good sense, and for me it does not interfere at all with remaining hopeful that I might just be the 1 in 5 my oncologist told me are cured with the treatment I’ve had. If so, the planning I’ve done is still relevant. A meteor could fall on my house at any time… right?

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

February 22, 2012 at 1:58 am  #1749    

blue skies

Hello, Debra. Because I am slow on the “uptake” in learning how to navigate the new site, I have missed seeing your posts most every day. Glad I tripped over this one.

I hope you are continuing to do well and I was pleased to see the final sentences in your post about the possibility of being the “1 in 5″ who could be cured with the treatment you’ve had. The possibility that I could find treatment options that might make it possible for me to add up to 5 years to my life from the time of my diagnosis — something I learned as a result of reading about others on this website — is really at the heart of my approach now. I am hoping that you and your medical team will continue to find ways to manage your disease and provide you with the best possible quality of life so that you can continue to enjoy your family, your cat, a little cake from time to time and do that Happy Dance! for a long time to come.

My husband and I worked with my mother-in-law on her advance directives about five years ago and used a similar instrument. At diagnosis, my medical team included the Five Wishes document with all the other stuff they handed me. I knew what it was and looked at it briefly before putting it back in my file (in tears) folder. From time to time I would take it out and look at it again and think about different questions as I was able. Little by little, my thinking and preferences became clearer (and the tears fewer) and it helps when conversations with loved ones turn to details that are part of that process. It gets easier, but it takes some time to get to where you are now and the peace that comes with crossing those nagging details off your “bucket list.”

You continue to be part of my personal community of people I care and think about daily. I’m coming out of a bit of a rough patch myself over the last several weeks but am doing much better now that the treatment is kicking in, so feel free to do a little happy dance for me today (the endorphins will do you good)!

February 22, 2012 at 9:38 am  #1751    

double trouble

Hi Blue Skies! Thank you so much for the update, and I’m very happy you’re finally feeling better. You amaze me. I’m so very hopeful that this treatment will bring good results.

I think I’m more at ease talking about Five Wishes in particular, and death in general, because I had a brush with the reaper while still in my 20′s. After that I started reading books like “On Death and Dying” by Elizabeth Kubler Ross, who was instrumental in bringing the concept of Hospice from England to America, and “Anatomy of an Illness” by Norman Cousins, who believed whole heartedly in the medicinal benefit of laughter. I also took a Hospice training course, and did some volunteering with them.

So, talking and thinking about death comes naturally to me. It is inevitable, after all. I will admit that it is much harder when the particular death I’m talking about is my own. I think we’re hard wired to reject the concept. I think I’m just more comfortable with it because I’ve visited the subject before. I do understand how tough a subject this is for most people, and I wish everyone could get the conversations over with while they are still well, when it seems far away.

I think it was very harsh to include Five Wishes in your information folder without any dialog. It’s a subject that should be brought up by an individual who is prepared to have a sensitive conversation about what the document is and why you might want to have one on file. A social worker perhaps, or your doctor. I’m really sorry that happened to you. More testament to the fact that people really don’t want to talk about it, and a very good example of why we, as a society, need to change our thinking about death and dying.

* steps of soapbox…* “Wait for it…”

:lol: :lol: :lol: HAPPY DANCE! :lol: :lol: :lol:

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

February 22, 2012 at 10:35 am  #1752    

blue skies

LOL! You often make me laugh…which is just what Norman Cousins recommends! I am also familiar with their work, which was popular reading during my college years. I am a pretty pragmatic sort, so not one to put my head in the sand (that’s about as much as I can say about how well I confront my personal situation). I also had the experience of being with my father as he fought and lost his own battle with lung cancer over a decade ago.

So, for me, I didn’t mind finding the Five Wishes pamphlet in the packet (it is also available in the oncology waiting room for people to pick up if they are so inclined…and shove it right back in the rack if they’re not ready). In fact, we paid “big money” to an estate attorney to give us her customized version of that document to help my mother-in-law think about and articulate what her wishes would be when the time came. I didn’t choose to go that route for my own planning.

Perhaps the best thing to be said for having the FIve Wishes document availble in the packet (with ALL the other stuff they throw at you) is that someone can pick it up and put it down and deal with it on their own terms privately and then talk to their doctor later when they are ready (the first few weeks and months may be too frightening and overwhelming with all a new patient is sorting through). For the first month or so, I couldn’t get past the office visit gateway question, “What is your birthday” without choking up.

I am so glad that you have written so eloquently in this and earlier posts on this subject. I hope we can capture some of the best writing that members have posted on this and palliative/hospice care and end of life issues somewhere on the website, once things settle down.

Just scrolled up to look at your Happy Dance and chucled again…another endorphin released and another cancer cell thwarted!

  • This reply was modified 2 years, 6 months ago by  blue skies.
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