Friday, June 4, 2010

Start talking ... now!

"Give it to me straight: do I have much time left?"

This was the question posed to me by a new patient just recently. She had cancer and it was spreading ... quickly.

"No, your time is growing very short."

Last week, she was walking throughout the nursing home. This week, she is bed bound.

"Will I be healed?"

We live in a "fix it" society that believes medical technology can fix anything. We deny that we will grow old, get sick and die. We forget that healing isn't just about the body.

"Yes, you will be healed, but not in the way you might have expected. Your cancer will not go away and will likely take your life. But your spirit will be healed and God's perfect healing for all of us is on the other side of the grave."

Sometimes it is spiritually and emotionally healing to let go of a futile fight. There is peace when we can stop raging against a progressing illness and just be there.

"Will I make it to North Carolina?"

Her daughter lived there and this patient wanted to visit her there. Her daughter was here now to take care of her mother.

"No, I don't believe you are strong enough to get to North Carolina."

"Can I go home to my house? I don't want to be here."

Most of my patients want to go home. Sometimes they mean the house they lived in for many years ... sometimes they mean their heavenly home. In this case she meant the former as it was more peaceful than the nursing home where she was.

"Well, I can't promise you that, but I'll see what we can do. In the meantime, we're committed to keeping you comfortable in body, mind and spirit."

"Does my daughter know how bad it is?"

Too often, families have a sense the end is near but fear talking about it with each other. The dying family member doesn't want to upset anyone and the other family members don't want to upset the dying person either. It's often an unintended conspiracy of silence which doesn't help anyone.

"Well, she's in the hallway with your nurse and it is our practice to be compassionately honest with people about what is happening. With your permission, I'll tell her what I've told you." My patient nodded.
 
The patient's daughter was clear about her mother's poor prognosis and I told her it was ok to talk about it with her mom. This patient did get home to her house for her final days and her daughter was able to be with her to the end. She lasted just 11 days in hospice care.
 
If there's anything I'd like to shout from a mountaintop it is to start talking about your end of life plans with your loved ones ... now! If you have trouble getting started, check out the Five Wishes web site at http://www.agingwithdignity.org/five-wishes.php. The site has the Five Wishes form which includes both the advanced directive for medical care and a medical power of attorney form. In addition, there are sections about what kind of comfort care you want at the end of life and what you want your family to know. The form is legal in 42 states and can be used in the other eight states in combination with state issued forms. There are videos and helpful books to assist you in having these conversations with your loved ones.

6 comments:

Lauralew said...

I worked as a nurse in an inpatient hospice facility for a year. Amazing how many adult children were in denial about the parent's ultimate prognosis and were bound and determined to save the parent's life, especially if the parent did not want it saved. I was physically attacked once, been called a murderer, etc. We all wore personal alarms just in case. You are so right--talk, talk and more talk. Talking about it does NOT make it happen, it is an act of love. Nevertheless, some simply cannot hear. Thank you for this post.

Beach Walkin said...

Five Wishes... awesome help. I used this with my mom.

Rebecca Ramsey said...

Important conversations. What a gift to her to have you there, to help and guide.

LutheranChik said...

Thank you for the useful reminders.

A neighbor of my partner's and mine is after 70 years of a hard-livin' life, was diagnosed with a large lung malignancy; the prognosis is not good. This woman's partner and family members are not being particularly supportive of her, she has no friends or support group, and she herself is in denial and is basically self-medicating herself into a stupor every day. She did confide to me that she was very afraid and had begun to pray every day, and I supported her in that...we've also taken the household meals and are taking this lady to the doctor tomorrow...but we want to provide more meaningful help to her -- especially because we suspect her time is short.

Reverend Mom said...

@Lauralew - I just had a funeral for a patient whose brother threw himself over the casket and shouted, "God will vindicate your murder at the hands of hospice!"

Sadly, the Church gets one hour a week to tell people to "be mindful of death" (as the Benedictines would say) and the world gets the rest of the week to delude you into thinking death happens to everyone but you.

seethroughfaith said...

thanks for this - very insightful