Unbefriended Patients (Research, Video 3:02)

“Unbefriended” is a word most people rarely hear or use. The very thought of being unbefriended carries a sadness that makes people dread experiencing it. Unfortunately, too many people are heading in that direction.

In the healthcare arena, unbefriended patients are those who have no surrogates to represent them in making medical decisions for self-determination. Being unbefriended jeopardizes a fundamental concept of American healthcare. Even more complicated both legally and ethically is an unbefriended patient who also happens to be in a vegetative state.

The process for making decisions on behalf of unbefriended patients is complicated and varies throughout the country. An example is this case of an unbefriended hospital patient admitted with cardiac arrest. The patient suffered significant brain damage and was in a vegetative state. This case occurred in a state where, unless an unbefriended patient will imminently die despite medical therapy, all measures must be taken to prolong the patient's life. With no surrogate with whom healthcare professionals could have a goals-of-care discussion, they were obligated to continue aggressive management despite knowing it would prolong, but not improve the patient’s condition. Prolonging life included a feeding tube and being transferred to a long-term care facility.

The importance of having early healthcare discussions regarding treatment and written advance directives including a surrogate (durable power of attorney) to make medical decisions cannot be stressed enough. If you were dying right now, would you be unbefriended? Would you be protected from overtreatment or undertreatment? Dr. Eric Widera explains solutions to this problem in this video brought to you by members of the American Academy of Hospice and Palliative Medicine.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Holiday End-of-Life Conversations: Five Questions

Take advantage of this holiday time together to engage in important end-of-life conversations. They can be crucial later in honoring wishes of those we love and ourselves. After all, it’s a great opportunity to have more family members involved.

Engage With Grace is a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what our loved ones want, but we really don’t. Later in life, when several people are involved in making inevitable decisions about threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. Some negative feelings may remain long after the deceased loved one has died. The key to preventing these kinds of interactions is having end-of-life conversations when they can be positive, including personal opinions regarding loved ones' wishes. Fortunately, many people actually enjoy discussing their answers with loved ones.

Add new meaning to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings or during a healthcare crisis. Some who are present this year may not be present next year. Everyone can benefit greatly from answering these questions and implementing the suggestions given. The Caring Connections website has information to help with your plans. (Click on the questions below to make them larger):

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

End-of-Life Conversations Honor Future Wishes

The holidays provide wonderful opportunities for families and close friends to get together, reminisce, and have a joyful time. But what about happiness in the future? Eight out of ten people say it is “very” or “somewhat” important to write down end-of-life wishes, but only 36% actually have written instructions. Why not take advantage of holiday time together to engage in important end-of life conversations that can be crucial later in honoring wishes of those you love and yourself.

Engage With Grace  is a a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what loved ones want, and we really don’t. Later in life, when several people are involved in making inevitable decisions about life threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. The key to preventing this negativity is having end-of-life conversations when they can be positive with personal input regarding what loved ones really want. Fortunately, many people actually enjoy discussing their answers with loved ones.

Are you aware that some chronically ill and dying Americans are receiving more care than they and their families actually want or benefit from? Add a new gift to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings during a healthcare crisis. You and your loved ones can benefit greatly from answering these questions and implementing the suggestions given by being proactive  when the time comes:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers in America and other countries and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Holiday End-of-Life Conversations

The holidays often provide opportunities for families and close friends to get together, reminisce, and have a joyful time. But what about happiness in the future? Why not take advantage of this time together to engage in important end-of life conversations that can be crucial later in honoring end-of-life wishes of those you love and yourself.

Engage With Grace is a a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what loved ones want, and we really don’t. Later in life, when several people are involved in making inevitable decisions about life threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. The key to preventing this negativity is having end-of-life conversations when they can be positive with personal input regarding what loved ones really want. Fortunately, many people actually enjoy discussing their answers with loved ones.

Add new meaning to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings during a healthcare crisis. You and your loved ones can benefit greatly from answering these questions and implementing the suggestions given. The Caring Connections website has information to help you with your plans. (Click on the questions below to make them larger):

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Engage With Grace: Discuss End-of-Life Wishes During Holidays

For three years running now, many of us bloggers have participated in what we call a “blog rally” to promote Engage With Grace, a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes. The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get conversations about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important. Believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having these conversations before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve helped make this a topic of national importance. We commend everyone who has taken this topic so seriously. 

Happy holidays and thank you to all who have done so much to spread the word, including sharing questions from The One Slide below:

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Homeless People: Advance Directives and Hospice-Palliative Care (Video 1:26 mins.)

When you see homeless people, you might wonder how they came to that condition, why some refuse to leave the streets, if they really care about their health. What about their end-of-life preparations? They probably aren't concerned about completing Advance Directives. Right? Wrong.

There are few studies on the homeless and their preparation for end-of-life care. However, a study by the Center for Bioethics at the University of Minnesota has some convincing results that homeless people do care about completing Advance Directives. The research involved fifty-nine homeless people recruited from drop-in centers. Half were given written instructions to complete Advance Directives in a self-guided manner. Others were given the same directions with guidance in completing them.

The overall completion rate was 44%. A higher completion rate of 59% was earned by those who received guidance in completing the forms. The rate of completion for the self-guided group was 30%. Among all participants who completed their Advance Directive forms, there was a significant decrease in the frequency of worry about death from 50% to 12.5%. Those who filled out the Advance Directive forms increased their plans to write down their end-of-life wishes (56% to 100%) and plans to discuss their related wishes with someone (63% to 94%).

This research concludes that homeless people can appreciate being afforded the opportunity to complete Advance Directives. Although some will complete the forms without help, when time is taken to assist them, they can be especially successful in participating in their end-of-life preparations.

You can read more here about this research from the “Journal of General Internal Medicine.”

This video describes St. Michael’s Nazareth House, where hospice and palliative care are provided for terminally and seriously ill homeless patients.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Perspectives on Dying from Hospice Patients and Healthcare Professionals: (Video 4:28 mins.)

Too often, I talk to adult children who haven't discussed death matters with their elderly parents. Sometimes when they try, parents won’t participate in the discussion. Most people die in institutions, and planning ahead is very important. Advance directives, wills, and other death-related documents should be completed before a crisis occurs and should be readily available.

A research study by the University of Georgia Institute of Gerontology focused on end-of-life preparations and preferences of elders and adult children of elders. Interviews were held with the two groups. The study determined that barriers to discussions about end-of-life preparation and preferences were fear of death, trust in others to make decisions, family dynamics, and uncertainty about preferences. Factors that promoted these discussions were acceptance of the reality of death, prior experience with death, religion or spirituality, and a desire to help the family.

Casually approaching end-of life discussions and creating written records of preparation and preferences were considered successful strategies for expanding communication on this sensitive topic. Knowing good solutions to overcome obstacles and promote these discussions can assist healthcare professionals in encouraging elders and their families in planning ahead.

What are the needs of the dying? How can the end of life be integrated as a natural and sacred human process? This video titled “Solace: Wisdom of the Dying” presents perspectives on dying from hospice patients and healthcare professionals.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog

Advance Directives Written and Sung ("My Advance Directive" Song 4:35 mins.)

Advance directives are important legal documents that guide medical professionals in how to treat patients in such situations as resuscitation. While some patients may want aggressive medical treatment, others may not. Patients can modify these directives at any time.

Healthcare providers are legally responsible for honoring advance directives, and they should be held accountable for implementing them. However, there is no guarantee that procedures patients request will always be followed. That’s why caregivers must be vigilant in keeping abreast of procedures involving patients and making patients’ written requests available.

Caregivers and others can contact local medical facilities for information on the appropriate documents for advance directives. They are not the same in every state. Forms can also be obtained from state health departments, legal offices, and on the Internet. Most states require that the documents be witnessed.

In addition to having written directives, people who want to make their death wishes even more emphatic can sing a song about how they want to die. A rousing song, written and sung by Vickie Hannah Lein, with music by Suzannah Doyle, “My Advance Directive” is a musical declaration celebrating death with dignity.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog

Hospice Care and Advance Directives

Advance directives are important legal documents that can be completed long before a patient is ill. The healthcare power of attorney, also known as the durable power of attorney for healthcare, designates the healthcare proxy, who is the person assigned to make medical decisions for the patient when the patient is no longer able to do so. The living will states the patient’s wishes regarding the administration of end-of-life medical treatment when the patient cannot state them.

Advance directives are available at hospitals, physicians’ offices, legal offices, state health departments, and on the Internet. All states do not have the same forms. People can register completed forms at the U.S. Living Will Registry, which makes their requests available to hospitals and healthcare providers across the country 24 hours a day.

In a national research study on advance directives, the Journal of the American Geriatrics Society reported that of the 1,587 who died in nursing homes, hospitals, and at home, 70.8% had Advance Directives. Hospice patients were more likely to have them. Patients with Advance Directives were less likely to use a feeding tube or respirator during the last month of life. Among other conclusions, the study determined that Advance Directives were associated with greater use of hospice and fewer concerns with physician communication and information about what to expect.

The Five Wishes document is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual. This document helps people express how they want to be treated if they are seriously ill and unable to speak for themselves. Click here for more information on the Five Wishes document.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog