Addressing End-of-Life Concerns

A study published in the January 2014 edition of the American Journal of Preventative Medicine reported that nearly 68 percent of people have concerns about end-of-life care such as the cost, the pain they might experience or issues of comfort and dignity. Nearly half (48.7 percent) reported having discussed the types of medical treatment they wished to receive in the event of a serious illness, yet, only 26.3 percent of participants had completed an advance directive. Not surprisingly, the top two reasons for not having an advance directive were lack of awareness and the belief that their families already knew their wishes.

Part of Arbor Hospice's mission as a community-based not-for-profit hospice is to educate the community on end-of-life care and advance care planning. In response to the concerns highlighted in this study and the lack of awareness about advance directives, Arbor Hospice wishes to share some of the most common end-of-life and advance care planning realities.

Myth: It is common for someone to experience a great deal of pain at the end of life.
Reality: Pain and other symptoms are common in individuals with serious illness, but pain and symptoms can be controlled. Hospice and palliative care doctors and nurses are specially trained to control each person's pain and other distressing symptoms, while honoring the patient's wishes.

Myth: Good care at the end of life is very expensive.
Reality: When someone spends time in a hospital or makes numerous doctors' visits, care can be expensive. For individuals who are willing to forgo curative treatments, hospice may be appropriate. Hospice care is covered by Medicare, Medicaid and most private insurances, and The Arbor Hospice Foundation raises money to cover the cost of care for the uninsured.

Myth: It is common to die in a hospital.
Reality: It is natural, and normal, for someone to go to the hospital when they are sick or dying. When cure is no longer a reality, you have a choice about where you want to be. Hospice and palliative care is available in nursing homes, assisted living facilities, private homes, some hospitals and residential hospices. Wherever a person calls home, they can receive care.

Myth: Choosing hospice means that I am giving up.
Reality: When cure is no longer possible, hospice provides the type of care most people say they want at the end of life - comfort and quality of life. The main focus of hospice is quality of life, pain and symptom control, emotional and spiritual support of the patient and their family and affirmation of life - making the most of each day.

Myth: My family and doctors know what I want at the end of life.
Reality: If you haven't talked with your family or doctor about your end of life wishes, they may not know what you are thinking. Each person has their own end of life preferences and your wishes may be different from those of your family. It is important to tell your loved ones what you want and share that with all of your doctors.

Myth: It is expensive to create an advance directive.
Reality: Advance directives are written instructions regarding your medical care preferences. This is the document your family and doctors will consult if you are unable to make your own health care decisions. Having written instructions can help reduce confusion or disagreement, and makes your wishes legal.

Many tools have been developed to help people and their families understand end-of-life issues and to aid in initiating conversations with loved ones, including The Conversation Project and Prepare. Arbor Hospice is also available to answer questions about the end of life and provide Five Wishes, an advance directive. You can also download Five Wishes here.

This blog entry was written by Gloria D. Brooks, Arbor Hospice President and CEO. You may contact Gloria by commenting below or emailing her at gbrooks@arborhospice.org.

How Do We Begin Conversations About The Care We Want At The End of Life?

If the content of daytime television talk shows is a guide, Americans are far more comfortable publicly discussing almost any aspect of their intimate lives than they are the irrefutable fact that they will die.

While we intellectually understand that we will not live forever, acknowledging that fact by talking
about it with loved ones is nonetheless an incredibly difficult thing for most of us to do. It is almost as if we have a superstitious belief that if we don't talk about it, it won't happen.

Yet, candid conversations with family members and close friends about the kind of care we wish to receive at the end of our lives may be one of the most valuable gifts we can give them.

And because that end sometimes comes suddenly and unexpectedly as well as from illness, these discussions are as important for 20-somethings as they are for older adults.

While we may know the value of such conversations, many of us are uncertain about how to initiate them and what to talk about once we do. That's why I was pleased to discover that The Conversation Project offers resources to help initiate these important discussions.

The Conversation Project offers a free "Welcome to the Conversation Starter Kit," which begins: "It's not easy to talk about how you want the end of your life to be. But it's one of the most important conversations you can have with your loved ones."

"This Starter Kit will help you get your thoughts together and then have the conversation."

"This isn't about filling out Advance Directives or other medical forms. It's about talking to your loved ones about what you or they want for end-of-life care."

"Whether you're getting ready to tell someone what you want, or you want to help someone else get ready to talk, we hope the Starter Kit will be a useful guide."

"We want you to be the expert on your wishes and those of your loved ones. Not the doctors or nurses. Not the end-of-life experts. You."

In addition to the Conversation Starter Kit, I recommend Five Wishes and Go Wish, both of which were described in an earlier post, to develop a better understanding of the type of care one desires at the end of life.

Have you initiated conversations about end-of-life issues with loved ones, and if so, how did you begin them?

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You many contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Is There Such A Thing As A "Good Death?"

"Is there such a thing as a good death?" I asked Arbor Hospice President and CEO Gloria D. Brooks.

I wanted to know because I had often heard the term "good death" in hospice conversations and I was confused about what it meant.

As a volunteer, I have observed patients and families during the "dying process," which in the minds of many begins when a doctor delivers a fateful diagnosis, continues through sometimes grueling treatment and concludes many weeks, months or even years later.

As a volunteer, I have also co-facilitated grief support groups in which family members and others recount their often painful memories and flashbacks similar to those experienced by individuals with post-traumatic stress disorder.

Few patients and family members, I thought, would describe the dying process as "good." But, perhaps I didn't understand what the term "good death" meant.

So, I put my question to Gloria to help me reconcile the idea of a "good death" with my experiences. When I posed the question, I didn't know the personal significance it would have for her.

"Hospice is about self-determination and quality of life," Gloria told me. "It's about how patients want to live each day. We want to know the things that are important to patients so that those things can be sustained as much as possible until the end of life."

"Each patient defines what quality of life means for him or her," she said, "and we support patients in having that life for as long as possible."

"Hospice is all about exploring options. We don't tell patients and families what is the best option for them because we truly don't know."

Sometimes patients' choices are a difficult thing for family members and other caregivers, and sometimes for hospice staff as well. The patient decides, and the rest of us respect that even if it is not what we would have chosen for them."

Gloria pointed out that quality of life is about more than self-determination, though.

"If pain is getting in the way of quality of life, we address that. For some, it may be symptom management, like controlling nausea so they can enjoy the foods that are special to them. For others, it may be remaining lucid to have important conversations with loved ones."

As our conversation neared its end, Gloria told me about her mother's death this past summer to illustrate how challenging it can be to apply the concept of self-determination, even for someone as committed to it as Gloria.

"My mother had been ill for 18 months. I wanted her to go to a doctor because she was tired and losing weight. But that was not what she wanted. Eventually, though, she agreed to go to the ER 12 days before she died."

"Because we had done her Five Wishes, I was able to be very clear with the hospital staff and family members about what she wanted at the end, which was not to be in the hospital attached to a lot of tubes. So, I took her to The Residence of Arbor Hospice where she spent the last 36 hours of her life."

"My mother had a good death by her definition because she wanted to be in charge of her life and did not want to die in a hospital. I can only hope that as my mother's patient advocate, I was able to give her what she wanted."

"A good death is a subjective thing," Gloria told me, referring to her mother's wishes. "Other people might look at it from the outside and wonder if it was a good death or not."

What is your definition of a good death?
This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Why It's Essential to Prepare an "Advanced Care Directive"

Being a hospice volunteer has caused me to become more aware of my own mortality. Death is less

an abstract concept about something that will happen out there to someone else at some time in the future. That awareness has caused me to be more intentional in planning for the inevitable.

An essential part of that planning is creating an advance directive regarding the kind of medical care I wish to receive at the end of my life.

Here's what's involved:

1. Designate a person to be your patient advocate. Depending on the form and where you live, the advocate may be given a different title. Regardless, this person is given your durable power of attorney for health care and is responsible for making important decisions about your care should you be unable to do so. Forms are available at most doctor's offices and health care facilities, including Arbor Hospice.
2. Have the patient advocate sign the form indicating acceptance of the responsibility.
3. Create a living will that describes the kind of care you wish to receive at the end of life. Preparation of a living will can be informed and enriched by the use of planning tools such as Five Wishes and the Go Wish Game.
4. Have one or more conversations with your patient advocate so he or she knows specifically what you do and do not want. The tools mentioned above can provide ideas and terminology that enable these discussions. Have similar conversations with family, friends and others with whom you are close to avoid confusion or conflict should a situation arise that requires the patient advocate to act on your behalf.
5. Make certain that your physicians, health care system and family members know whom you have designated as a patient advocate and that they have copies of your living will. Take your durable power of attorney for health care and living will documents with you if you are hospitalized or are traveling.

Having end-of-life conversations and making these decisions may be difficult. Yet, they are truly a gift we give not only ourselves but those who care about us as we relieve them of the responsibility of guessing our wishes.

We also lessen the likelihood of misunderstanding and conflict among family members as they act on the wishes we've expressed in our living wills.

These are gifts that can extend well beyond our lifetime.

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.