Category Archives: death and dying

The D-Word (Don’t Be Afraid To Say It)

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Death. It is a reality we all will experience.

But when a person faces a serious medical condition, we may be reluctant to speak the words “death” and “dying.”

Dr. Edward Bruera of the MD Anderson Cancer Center in Houston says that one reason families don’t want to talk about death is the fear that doing so will destroy a patient’s hopes of surviving. (His thoughts were shared recently via the Houston Chronicle.)

Dr. Bruera suggests that we should think of end-of-life planning as “smart decision making.” When you buy a car, you purchase insurance. You wear a seat belt. You lock the car when you park it. You hope for the best. But if things don’t go well, you have prepared for the worst.

“When we normalize [talk about dying],” Bruera said, “and realize that we all need to make some preparations and plans, it lifts a weight from the shoulders of patients and families. Most of the time, patients find these conversations reassuring, and that’s gratifying to us.”

Have you spoken to your spouse, your children, your parents or other loved ones about end-of-life care? Do you want to die at home surrounded by loved ones? Would you prefer that medical teams do everything possible to keep you alive?

Have you selected an individual to speak for you and make end-of-life decisions for you if you are unable to make them? Have you made your end-of-life care wishes known through a living will?

This Thursday, April 16, is National Healthcare Decisions Day. It’s a day whose purpose is to encourage Americans to make their wishes known via advance directives (living wills and medical power of attorney designations).

Hope Hospice team members will be at two area Walgreen’s locations on Thursday, April 16, 11:30 a.m. to 1:00 p.m. to answer questions about advance directives and to share forms and other printed material with visitors. Those Walgreen’s locations are 13992 Manchester in west St. Louis county and at 519 South Truman Boulevard in Festus.

(photo credit: http://www.flickr.com/photos/50965924@N00/16262956505 via http://photopin.com, https://creativecommons.org/licenses/by/2.0/)

 

 

 

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How Much Time Do I Have Left?

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“How much time do I have left?”

That’s often the reply when a doctor says to a patient that treatments are no longer working and that a patient should consider hospice.

But maybe the question should be: “How can I make sure that the time I have left is best utilized?”

It is impossible to say exactly how much time a person has left, so the best estimate is an educated guess. Even with cancers that progress in patterns that are familiar to physicians, no one can say for sure how long a patient has left.

For a patient and his or her caregivers (and others who are close to the patient), the choices are continued (often futile) efforts to confront the terminal condition or the pursuit of meaningful life experiences during one’s remaining time.

If you search the internet for personal hospice stories, you will read of sons and daughters who tell of a parent’s final days/weeks/months and a different, special kind of closeness enjoyed with mom or dad. You will learn of survivors who were grateful for the quality experiences with their loved ones before their passings. And you will learn the value of being able to say goodbye—for the patient and the survivors.

If a patient seeks hospice care in time (there’s that word time again!), he or she may have opportunities to visit with friends and family and have conversations that may not be possible if the patient is in a hospital ICU.

“How much time do I have left?” At age 40, we might think we have another 40-50 years. At age 65, we may figure on living another 25 years or so. At age 90, we know time is shorter, but even then we may presume that death is still down the road.

When a terminal diagnosis is delivered, things become more urgent. Yes, the number of days remaining is important to consider. But the quality of those remaining days should also be considered.

For information about hospice care in metro St. Louis, please call Hope Hospice at 314-984-9800.

(photo credit: http://www.flickr.com/photos/30227069@N06/4337496170, http://photopin.com, https://creativecommons.org/licenses/by-nd/2.0/)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hospice > Assisted Suicide

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In late 2014, Brittany Maynard, attracted a large amount of sympathy and generated much discussion of assisted suicide. The 29-year-old woman with brain cancer chose to end her life in Oregon where assisted suicide is legal. She was a beautiful, vivacious young woman whose first-person writings stated her desire to spare her family the tragedy of watching her condition deteriorate as she progressed toward death.

The issue of assisted suicide (often referred to as “death with dignity”) is a polarizing topic with respected individuals and organizations taking stands on both sides of the argument.

In states where assisted suicide is legal, hospice organizations must make decisions as to whether to allow their staff members to participate in these procedures. Many individuals who choose assisted suicide in these states are hospice patients. Most hospices do not allow their staff members to be present when the procedure occurs.

We agree with Dr. Sandeep Jauhar who writes on CNN.com: I still believe that for most terminally ill patients, hospice care is a better option than assisted suicide. Hospice offers team-based care with family involvement, often in a patient’s home, that focuses on pain management and dying with some comfort and dignity.

Wesley Smith, writing last month on FirstThings.com, shared these thoughts: Hospice is about living, not dying. More precisely, hospice supports life with dignity for its patients and offers invaluable social and emotional support for patients’ families.

Noted hospice advocate Dr. Ira Byock, writing in January in the Los Angeles Times, says: I aid people in dying by treating their symptoms and supporting them through the difficult practical and emotional tasks of completing their lives. In more than 35 years of practice I have never once had to kill a patient to alleviate the person’s suffering.

He continues: I believe that deliberately ending the lives of ill people represents a socially erosive response to basic human needs. If we can stay civil and (even relatively) calm, we can debate physician-assisted suicide while also substantially improving end-of-life care.

As with most such controversial topics, much discussion lies ahead. At Hope Hospice, we encourage you to learn about all the ways hospice care can enhance the end of life process and provide comfort and support to patients. If you have questions about hospice care in metro St. Louis, please call us at 314-984-9800.

(photo credit:    http://www.flickr.com/photos/32066106@N06/6087917593, http://photopin.com, https://creativecommons.org/licenses/by-nd/2.0/)

 

 

 

 

Let’s Talk About Death

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A new report called Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life was issued in September by the Institute of Medicine, the health arm of the National Academy of Sciences.

Among the major determinations in the report are these two important points:

“Most people near the end of life are not physically, mentally of cognitively able to make their own decisions about care. The majority of these patients will receive acute hospital care from physicians who do not know them. Therefore, advance planning is essential to ensure that patients receive care reflecting their values, goals and preferences.”

“Not only do most Americans lack knowledge about end-of-life care choices, but the health community and other leaders have not fully utilized strategies to make that knowledge available, meaningful and relevant across diverse population groups.”

The report suggests that all Americans begin talking about death and end-of-life choices early and often. When? At major life milestones, even if they occur well before old age or life-threatening conditions are factors.

As a Newsweek article about the report states: “The ultimate goal is to ‘normalize conversations about death and dying,’ so that people are more comfortable discussing and preparing for the eventual situation.”

If hospice care is a “somewhere down the road” possibility for you, your spouse, your parent or other loved one, it is vital to have conversations now. Conversations with family members. Conversations with your doctors.

Make you wishes known and take note of those expressed by other family members. These wishes should be revisited from time to time to make sure that desires are clearly stated and understood. Also, an individual’s thoughts may change over time.

Death is inevitable. Even though you may plan to be around a few more decades, things can change in a heartbeat, literally. Talking about death now (and again later) allows you and your loved ones to approach the ends of your respective lives with confidence that your wishes will be honored.

For information about hospice care, call us at Hope Hospice at 314-984-9800. We serve patients and families in St. Louis city and county and Jefferson, St. Charles and Franklin counties.

(photo credit: https://www.flickr.com/photos/ahartfie/8305950976/, http://photopin.com, http://creativecommons.org/licenses/by-nc-nd/2.0/)

 

Anticipatory Grief

Following the death of a loved one, a friend or an associate, we tend to suffer grief in varying degrees and for varying periods of time.

Grief that precedes an anticipated death can have many of the elements of grief that occurs after a death, including depression. Added to this grief is the uncertainty of a future without the presence of the person whose passing is awaited.

An article posted on the National Cancer Institute’s cancer information database states that anticipatory grief may not always occur. The article also points out that grief before a death does not shorten the time of grief following the passing.

Anticipatory grief, the article suggests, can give the family more time to get used to the reality of the loss. Facing this stark reality can lead family members to complete unfinished business with the dying person, such as saying goodbye and expressing love that may have not always been readily shared. Try to make your loved one’s remaining time meaningful.

For caregivers, the emotions of anticipatory grief may be combined with the stress and exhaustion that come from attending to the dying patient. Share your feelings with other family members and your support group, including your hospice team members.

Remember that while you are experiencing anticipatory grief, the dying person is also faced with a multitude of feelings as she or he becomes aware that life will soon be ending. Just as family members experience anticipatory grief in various ways and to different degrees, so, too, do those who are facing death. Your hospice chaplain or your family’s religious leader can provide counsel.

For answers to your specific questions regarding grief before and after the passing of a loved one, call Hope Hospice in metro St. Louis at 314-984-9800.

 

 

 

 

 

 

Gail Sheehy on Being a Caregiver

If you find yourself suddenly the caregiver for a parent, a spouse, a partner, a sibling, you may be overwhelmed. Not only are there many new responsibilities, there is much mystery that lies ahead. Where do you go for help? Who can tell you what to do in this new role?

One source of useful guidance is the 2010 book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. She is the author of the 1976 book Passages, which helps define several phases of adult life. She now describes herself as “author, journalist, lecturer, advocate for caregivers.”

In Passages in Caregiving, she writes about the episodes in her husband Clay Felker’s slow demise. He died in 2008, seventeen years after his first cancer diagnosis. She writes about things she learned from personal experience, as well as insight she gathered from talking to other caregivers.

In the book, she identifies eight distinct “turnings,” starting with “shock and mobilization” and ending with “the long goodbye.”

Among her tips to caregivers is encouragement to take charge of the situation. She writes to caregivers: “How you handle this crisis will shape how you feel about yourself and almost certainly will change you in ways that follow you to the end of your days.”

She also tells caregivers, “We cannot do it alone. No one can.” She writes: “We need to grow a network of family, friends and veteran caregivers to help us understand what we’re going through and pitch in wherever they can.”

Of hospice care, Sheehy writes: “Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process.”

As we at Hope Hospice tell patients and caregivers, every situation is different. But there are common elements that exist in most end-of-life experiences. Similarly, your caregiving experience will be different from that of Gail Sheehy. But by having walked that path, she is able to share her story (as well as those of other caregivers) in a way that can provide you a better idea of how to proceed.

If you are a caregiver and have questions about hospice care, call us at Hope Hospice at 314-984-9800.

(Passages in Caregiving is available from Amazon in a print edition and e-book. The Kindle version comes with several videos on the topic. It is also available in local libraries.)

Death: Not An Easy Thing to Talk About

Last year, writer Ellen Goodman launched The Conversation Project, a program to promote discussing end-of-life issues. With support from the Institute for Healthcare Improvement, Goodman, 72, initiated the project six years after her own mother died. Goodman writes: “We talked about everything except one thing: how she wanted to live at the end of her life.”

The Conversation Project released results in September of a survey it conducted recently. According to the survey, 90 percent of those surveyed said they want to talk about end-of-life care, for their parents and for themselves. But only 30 percent of those surveyed had actually had family conversations about how to handle end-of-life. Goodman’s thought: “It’s always too early… until it’s too late.”

Among those who had not discussed end-of-life care with loved ones, 29 percent said they didn’t need to worry about it yet. 23 percent said the reason was they weren’t sick yet. 21 percent said the subject makes them uncomfortable. 19 percent said they didn’t want to upset their loved ones.

About one-fifth of those questioned who had not had end-of-life discussions said they were waiting for another loved one to bring up the subject. 48 percent said that if a loved one did ask about their desires for end-of-life care, they would welcome a discussion of their wishes.

Ellen Goodman points out that the conversations about how a person wants to face the end of his or her life serve to bring comfort not only to the person facing death, but also to those who survive. “Death is still a hard loss, but you can reduce depression and guilt if [survivors] feel that they have done what the person they love wanted.”

The conversations also serve to preempt family discord over the way a parent’s end-of-life care is handled. Goodman says, “The last thing that you want as a parent is for your kids to have a huge falling out at the end of your life.”

As a hospice care provider, we at Hope Hospice echo the thoughts expressed by Ellen Goodman. Family conversations about end-of-life issues are sometimes hard to get started, but they are of vital importance.

Click HERE to download The Conversation Project’s Starter Kit. It can provide help for families who want to get a conversation going.

For questions about hospice care in general and for specific questions about Hope Hospice, please call us in St. Louis at 314-984-9800.