End of Life Care: The Conversation Project

Time and time again, I talk to caregivers who have reached that critical point in their sandwiched lives -- they have suddenly realized that they need to do something to help mom or dad because of an illness or diagnosis.

And, time and time again, I ask if they've had "the conversation" with the parent. Do they know their wishes for health care treatments? Do they understand the finances, where the money is (or isn't?) Are they worried about their parent living at home with no supervision? Will the parent willing go to assisted living or do they want to stay at home for as long as possible? Which of the adult children do they trust? And the list goes on.

Many times, "the conversation" hasn't happened and the adult caregiver is stymied as to how to proceed.

Enter the Conversation Project.  Here's what they say:
"The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves. We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love, before it’s too late. Together we can make these difficult conversations easier. We can make sure that our own wishes and those of our loved ones are expressed and respected."

These folks have put together a great downloadable starter kit that helps guide a productive conversation about wishes (which is appropriate for end-of-life as well as serious illness.) 
http://theconversationproject.org/starter-kit/intro/

Depression rates plummet if you've had this conversation.  Dianne Sawyer calls it "estate planning for the heart," in this clip about the guide.


ABC US News | ABC Business News

You can also download a CDC resource guide to help with advanced directive planning. [Everyone 18 and over needs an advanced directive... HIPPA rules and all.]

Start the conversation for yourself, your clients and your family. You will be glad you did.

What the Heck is Palliative Care?

After a conversation with my colleague and neighbor, I decided to do a bit of research on palliative care. If you are hanging out in the medical reform circles, you hear a lot of buzz words like patient-centered home, reimbursement rates, etc.  After hearing enough of this stuff, it is nice to hear a "system" that is already in place, called palliative care, that provides a good model. 

Ask your medical professionals about the availability of palliative care for yourself or your loved ones. If you are developing a care-tech product, look at incorporating it use into palliative care. Where does it fit? How will it enhance quality of life or positively influence the course of illness? 

Here is some info from the CSU Institute for Palliative Care website:

Palliative (pronounced PAL-lee-uh-tiv) care is health care that focuses on improving quality of life and comfort for patients with serious or chronic illness. It focuses on relieving the pain and physical symptoms as well as the emotional stress, fear, frustration and spiritual concerns that major health problems can create for those with serious illness(es) and their families. Palliative care is provided by team of professionals, typically including doctors, nurses, social workers and spiritual counselors. 

Palliative care can be received at the same time as other treatment and has been proven to help those with serious illness live longer, have a more rewarding life and to ease the stress on those who care for them. It is available for patients of all ages who are at any stage in their illness. 

Palliative care:

·       Provides relief from pain and other distressing symptoms.

·       Enhances quality of life, and may also positively influence the course of illness.

·       Integrates the psychological and spiritual aspects of patient care.

·       Uses an interdisciplinary team approach to address the needs of patients and their families. This typically includes a physician, nurse, social worker, pharmacist, chaplain and others as needed.

·       Offers a support system to help patients live as actively as possible throughout the course of an illness.

·       Offers a support system to help loved ones cope with stress during the patients' illness and in their own bereavement.

·       Is applicable early in the course of illness, in conjunction with other therapies that are intended to cure an illness or prolong life, such as chemotherapy, radiation therapy, surgical procedures, etc.

·       Affirms life and regards dying as a normal process.

I highly recommend signing up for the free caregivers handbook available from the CSU Institute for Palliative Care. This is an electronic version of an excellent San Diego County caregiver resource.  To get the e-book, you must subscribe to the Institute's consumer quarterly newsletter which keeps you updated on the latest information about easing suffering and improving quality of life for those with illness.  Click Newsletter cons (consumer) in the subscription screen or add any of the other items if you want the professional information.

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