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.

And in the end ...

I must admit I'm getting very frustrated with all the misinformation about health care reform going on right now. At the risk of being called a "socialist," I have always believed that there are certain things that should be treated as rights and not privileges. We seem to understand that when it comes to offering free public education to all young people from kindergarten through the 12th grade. Basic foundational education is not a privilege, it's a right and a literate populace is one of the preconditions to having a stable democracy.

Another thing I think is a right is basic health care for all people. There's a certain self-preservation logic to this. There are two major risks to not offering universal health care. The first is that those who do not have coverage will become an economic burden because they delay treatment of their illnesses and, when they finally do, they will use the most expensive means of procuring treatment (like showing up in the ER of the local hospital). The other major risk is a public health threat because those without access to health care can be infected with a communicable disease that can spread to the general population (think tuberculosis for one!).

The misinformation about end of life planning really galls me! These same senators who stuck their noses into the Terri Schiavo case back in 2005, now think the government should not be involved in end of life decisions. Give me a break! If Terri Schiavo had filled out an advanced directive, that whole legal battle would have never played out. You'd think our representatives would understand that reimbursing people for having a consult with their doctor on the options for end of life care would be a priority after that debacle. How sad that we have such sort memories!

As a Visitation Minister, I visit a lot of people at the end of their lives. I have had to have heart to heart talks with people about enrolling in hospice care and why they need to make the call rather than just sit in denial and wait for their adult children to do it for them. I have stacks of Five Wishes forms available for people to fill out and make their own personal beliefs and wishes known to their families. But in the end, I am not a doctor and cannot have the conversation about outcomes with respect to aggressive treatments at the end of life.

We are a death denying culture and any mention of death is used as the ultimate political weapon to strike fear into the hearts of people about any kind of health care reform. I pray that our people will see this fearmongering for what it is. I also pray for people to get real and know that, in the words of Jim Morrison, "No one here gets out alive."