Showing posts with label Advance Care Planning. Show all posts
Showing posts with label Advance Care Planning. Show all posts

Thursday, August 28, 2014

Considerations at the End of Life

Following a death, there are many things that must be done by family members or representatives of the deceased. These can be difficult times for everyone involved, and many issues may be more easily dealt with before the end of life. These issues may include decisions about:

  • Funeral home
  • Cemetery or funeral service
  • Monument
  • Casket or urn selection
  • Vault selection
  • Clothing for viewing of the deceased
  • Information for the obituary
  • Music, prayers and/or speakers for the memorial or funeral service
By contacting a funeral home in advance, useful information and assistance may be obtained. In addition, pre-planning and signing necessary papers prior to death may qualify families lower rates for services provided by the funeral home.

After your loved one passes, phone calls to various agencies, organizations and personal services may also be necessary. Some agencies may need to know the date of the death. In most cases, the funeral home will provide you with needed documentation, such as a death certificate, for these agencies.

Calls that may need to be made following the death of your loved one include:
  • Your faith system, such as a minister, rabbi, spiritual advisor
  • Insurance agent, such as life, health, disability
  • Unions and fraternal organizations
  • Attorney
  • Accountant
  • Executor of the estate
  • Government offices, including Social Security and Internal Revenue Service
  • Pension plans
  • Veterans Administration
  • Bank, investment companies, mortgage companies
  • Title on all real estate property may have to be changed. If applicable, application for widowed person exemption as well as homestead and disability exemptions may be completed.
One of the many roles of the Arbor Hospice Care Team is to help patients and families with these tasks. If you have questions, feel free to contact your team.

Thursday, June 5, 2014

The Desire To Be Known

"As one gets older one's fear subsides. What becomes more and more important just to be known, known for all that you were during this brief stay. How sad it seems to me to leave this earth without those you love the most ever really knowing who you truly were." -The Bridges of Madison County

In the past three years, I have supported dozens of Arbor Hospice patients and their families in preserving patients' life stories on video and DVDs.

I have learned through those experiences that most of us have one fundamental thing in common as our lives near their end - we want to share what we have experienced and learned and to be known for who we uniquely are.

During the hour or two that it typically takes to record patient and family memories, patients share:
  • Life events and memories that no one else in history has had or will ever duplicate;
  • The simple but always profound wisdom that they have acquired over their lifetimes, no matter how long or brief life has been (the oldest patient was on the cusp of 101 and the youngest was 17); and
  • Special messages of encouragement and support to children, grandchildren and other loved ones that will resonate across generations.
It is not necessary to wait until the end of life to reveal to others who we are. Use every opportunity that presents itself to reveal to your loved ones what you have experienced and what your life has taught you?

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.

Thursday, May 29, 2014

1,000 Weekends

A few years back, I read an article that said the average 63-year-old man had 20 or so years to live, a number of significance to me because I was 63 at the time.

I quickly calculated that I had about 1,000 weekends of life expectancy, a number that while quite substantial had a finiteness about it that caught my attention.

I realized that it was time for me to make some fundamental decisions about the quality of life I wanted to have during those thousand weekends, not to mention the other days of the week.

Rather than being depressing, this awareness sharpened by my focus on ensuring to the best of my ability that I use whatever time remained - however limited or long it may be - in ways that are aligned with my values and goals.

Being, not doing

Interestingly, my new-found appreciation of the finiteness of life did not lead me to list things I wanted to do (for instance, a "bucket list"), but rather to determine how I wanted to be. As a result, I found myself jotting down terms like these:
  • Gratitude: I wanted to be conscious throughout the day of the many things for which I am thankful.
  • Compassion: I wanted to be sensitive to the suffering of others and to do what I could to alleviate it.
  • Learning: My life is most satisfying when I am intellectually challenged through activities that stretch my mind and expand my perspective.
  • Contribution and service: I am happiest when I am more focused on others than on myself.
  • Mindfulness: The everyday moments of my life contain many riches that I can only appreciate if I experience them one by one.
None of us, of course, no matter our age, know if we will enjoy the satisfactions of 1,000 weekends or even just one.

Pondering these things recently, I decided it was time to update my longevity status, so I used the Social Security "Actuarial Life Table" to determine that I had a life expectancy of about 15.5 more years, which means I have just over 800 weekends remaining.

The clock is clearly ticking, as it is for each of us. To mix metaphors, I can hear the bell tolling in the far distance, but hopefully not yet for me.

What are the implications for you of acknowledging at a deep level that your life is finite, whatever its length may be? Does it affect the way you choose to live today?

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.

Tuesday, April 15, 2014

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.

Thursday, February 20, 2014

The Pain of Deception....

"What tormented Ivan Ilyich most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need quiet and undergo a treatment and then something very good would result...

This deception tortured him - their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie." - The Death of Ivan Ilyich

When I was young, many aspects of illness and dying were kept secret, not because it was thought necessary to shield children from life's unpleasantness, but because society struggled even more than today with acknowledging the inevitability of sickness and death.

A disease such as cancer, back in the 1950s, was more like a sham
eful family secret to be whispered among relatives and friends than a medical condition.

In recent decades, though, through the efforts of hospice and other health care providers, the subjects of death and dying are opening discussed on television and around dinner tables. Those who are ill, and those who are not, talk with loved ones about what they want at the end of their lives and prepare advanced care directives.

As a result, needless suffering for those at the end of life and their families has been significantly reduced.

Which means that this is not only an opportune time to live, but also in which we are more likely to die with the dignity and respect that is our due.

What is your experience with open and honest conversations about illness and death with family members and other loved ones?

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.

Wednesday, February 12, 2014

Tips for the Sandwich Generation

The Sandwich Generation is an increasing number of people experiencing the emotional and physical struggle of caring for an aging parent while still raising children.

According to the National Alliance for Caregiving and MetLife, workers who care for elderly relatives cost U.S. businesses over $34 billion annually in absenteeism. In addition, there are more than 25.5 million Americans who try to balance work, raising a young child and caring for an adult over the age of 50 at the same time.

These simple tips can help caregivers balance life and avoid burnout:

  • Put your health first. Caring for an aging loved one can cause stress and anxiety. As much as you would like to put everything on hold, your loved one cannot be take care of if you are not well.
  • Recognize the signs of caregiver burnout. Look for a change in appetite, irregular sleeping patterns or withdrawal from family and friends. Take steps to protect your own health. Don't be afraid to ask for help and learn coping techniques such as journaling or taking a relaxing walk.
  • Educate yourself on your loved one's illness. Talk to your loved one's doctor and ask for online resources and brochures. The more educated you are, the better care you will be able to provide for your loved one.
  • Seek support. Many nonprofit organizations offer support groups to help you get through this difficult time. You should remember that you don't have to go through this alone and that there are other people who may be in a situation similar to yours. Support groups can offer an outlet to vent frustrations and find alternative ways of dealing with stress.
  • Make communication a priority. Hold regular family meetings to keep everyone informed on your loved one's condition. It's also a good idea to maintain open communication with your loved one. Start talking about the future now and make important decisions with your loved one about a living will and advanced directives.
  • Learn your company's caregiving policies. Talk to your supervisor about your situation as many employers are sympathetic. Ask if your company offers basic elder care benefits and inquire about the Family Medical Leave Act. Eligible employees are granted up to 12 months to take care of an immediate family member with a serious condition. Discuss alternative arrangement such as working from home or different hours of work.
This blog entry was written by Jaclyn Klein, Arbor Hospice Communications Specialist. You may contact her by commenting below or emailing jklein@arborhospice.org.

Tuesday, January 21, 2014

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.

Wednesday, January 8, 2014

The Hardest Question


The family dropped by The Residence of Arbor Hospice unexpectedly instead of setting up an appointment, which is the preferred course. So, out of desperation, they tried my line. "I'll do it," I enthused looking for an excuse to leave my computer and interact with family members.

Introducing myself to the team of five, I learned they were all visiting from out of town. Looking exhausted as families so often do by the time I meet them; California, Colorado, Washington, they were all here from somewhere else trying to do the right thing for their sister. "I can't care for her at home any longer," confessed the daughter, who was doing her best but needed support. Two days of meetings with the oncologist, the internist, the surgeon, had left them spent and bewildered. What was the right thing to do?

After the tour, I responded to a few questions, "do you have physical therapy and occupational therapy," asked one. No, I explained that our focus was on comfort care and that if rehabilitation was needed, their sister/mother would be better off in a skilled nursing facility.

When all their questions were answered to the best of my ability, I asked the stumper question. It's the question I've come to learn that stops them cold. I have only met one family who could answer it right away.

"What's important to your sister from this day forward? If she can't be cured, how does she want to spend the remainder of her life?" It is my experience that these are the questions that often don't get asked during the frantic encounters with our medical system. These questions and many like them, are asked of patients and families when a loved on is enrolled in hospice and then the hospice team works to make it happen.

"Well, she likes baths; do you have a place for a bath?" I showed her the spa room with a large jacuzzi-type tub. "She lives on the water and loves looking out on the water." I showed the pond and the beautiful gardens. "She'd like this," remarked the daughter.

I have found that when we focus on what the dying person wants, by giving them a voice, the patient and their family is energized. The mood changes from doom and gloom to one of possibilities. There is an immediate shift in energy.

So, what about you, do you know what you want at the end of your life? Here are my top three wishes:

1. I'd like to be outdoors when I die, preferably under a tree with the sunlight on my face (unless it's  
    winter of course, then I'd like to be by a sunny window).

2. I too love baths, with lots of bubbles, please.

3. Funny YouTube videos like Ellen DeGeneres - Here and Now should be playing and if we laugh
    too hard, please play some Carol King and the Beatles.

This blog entry was written by Margaret Adrain, Arbor Hospice Vice President of Marketing and Business Development. You can contact Margaret by commenting below or emailing her at madrain@arborhospice.org.
 

Tuesday, January 7, 2014

Hospice is Palliative Care And More

"May you live all the days of your life." - Jonathan Swift

I knew a man who entered hospice care after a long courageous struggle with an unrelenting disease.

Some of his friends, he told me, protested his decision, wondering why he would choose hospice when he seemed so "healthy," particularly when compared with how he felt during the various treatments that had extended his life by several years. To them, it seemed he had given up the battle, that he had given up on life.

The man explained to his friends that he hoped to live many more months and that it was important to him to form trusting relationships with the hospice staff - the nurses, social workers, chaplains and volunteers - who he anticipated would become a progressively larger part of his life in the weeks ahead.

While he didn't think of himself as a religious man, during his final months, he welcomed conversations about life's meaning and about what he hoped for in the final days and hours of his life.

Once, I told him that I admired his forthrightness and courage, and that I appreciated what he was teaching me about how I might someday face my own death.

After I spoke, we sat quietly for a moment. Then he smiled, a man who had spent his long professional career serving others, acknowledging that he had done so once again.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@arborhospice.org.

Thursday, January 2, 2014

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.

Thursday, December 26, 2013

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.


Thursday, December 19, 2013

Irrational Fears of Death and Dying

Fear. It's the biggest thing holding someone back from their goals, dreams and desires. For some it's a fear of being disliked, of not being good enough or being too much. When it comes to the end of life, it could be a fear of initiating an important conversation.

On the first few interviews I went on with Arbor Hospice patients and families, I hesitated when it came time to ask the patient or family member about the illness and how it felt to be introduced to Arbor Hospice.

Our culture is uneducated and uncomfortable when it comes to death, and I was falling into the trap. I was afraid to ask almost as if I would be cursing myself or those around me by talking about death and dying, or invoke painful memories.

I was quite naive in those interviews with patients and families. They had clearly already begun thinking about the end of life and had chosen comfort care, maximizing the days that were left. They knew why I was there and were willing to share their story.

I had nothing to fear. Time and again, I've heard from patients and families how having important advance care planning conversations led them to Arbor Hospice or ensured their wishes were followed. I've heard patients tell me how wonderful it was to be able to focus on what's most important to them.

Many aren't so lucky. Research shows that most people want to die at home, without pain surrounded by loved ones. Nearly 60 percent do not have this experience. Only 30 percent of Americans have an advance directive, and I am not one of them. I justify this by saying I'm only 24, but I know that's not an excuse.

To be honest, I'm not even sure my parents have a written advance directive. I haven't taken the time to find out or initiate a conversation. I'm afraid they'll think I'm pushing them out the door.

But I refuse to let fear stand in my way. I know my fear is probably irrational - just like many of my fears. I want to honor my parents' wishes when their end of life comes, hopefully many years from now. And I hope they'll be proud and grateful that I asked them "what's most important" and how they want to be cared for at the end of life.

I'm facing my fears - one at a time. I encourage you to do the same.

This blog entry was written by Jaclyn Klein, Communications Specialist with Arbor Hospice. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.