Tag Archives: end-of-life

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/)

 

 

 

Important New Book: The Conversation

The Conversation

Another important book about the way we handle end-of-life in America has just been published. The Conversation: A Revolutionary Plan For End-Of-Life Care by Dr. Angelo Volandes presents useful guidance for patients, families and doctors regarding difficult conversations about the best practices for end-of-life treatment.

In the book, Dr. Volandes offers actual sample scripts that illustrate the right ways to address these tough questions.

“Despite billions of dollars in new technologies in America’s finest hospitals,” he writes, “the most important intervention in medicine today happens to be its least technological: timely and comprehensive discussions with patients as they near death.”

Volandes tells stories of several patients and how they chose to handle the approaching end of their lives. Every story is different but each has the common element of a conversation to determine what is really important to the patient.

He is not the first doctor to point out that many in his own profession have shortcomings in communication. He writes: “When it comes to talking with patients about end-of-life care, doctors rarely acknowledge the skill and practice needed to perform one of the hardest ‘procedures’ of all: having The Conversation with patients and families. Unfortunately this short-sightedness results in patients’ lives that end with bad deaths.”

If The Conversation leads patients, families and, especially, doctors to talk more openly about these issues, Dr. Volandes will have scored a major accomplishment. One of the book’s stated goals is to embolden patients to ask questions when doctors do not initiate the conversation. He encourages doctors to become catalysts of change.

We applaud Dr. Volandes for writing this book. Take a moment to view his video which he talks about the book.

For answers to your questions about hospice care in St. Louis, please call Hope Hospice at 314-984-9800.

 

Beyond Six Months

The main qualification for admitting a new patient to hospice care is a diagnosis stating that the patient has six months or less to live. But that diagnosis is an educated guess. In many instances, such a diagnosis is amazingly accurate—but not always.

Sometimes this speculation significantly underestimates a patient’s remaining months of life. Many hospice patients live beyond six months. A variety of factors can affect a patient’s longevity.

Occasionally, removing a patient from aggressive drug treatment can have positive results when major side effects are taken away. The tests and observations that identified the reason for the six-months-or-less estimate are not necessarily rendered invalid. But a change in circumstances can lead to other physical changes and attitude changes.

With certain illnesses and diseases, life expectancy can be predicted more accurately, based on medical records of other patients. But with other conditions, data may be more difficult to analyze, making the time until a patient’s passing harder to pinpoint.

Additionally, patients often strive to hang on for milestone events: Christmas, Easter, an anniversary or other family event. This determination to stay alive can actually help extend life. We at Hope Hospice have seen it occur many times. Often, once the milestone has been celebrated, a patient’s decline can be rapid.

Just because a patient is admitted to hospice care, friends and family should not presume that her or his demise is imminent. Yes, in some cases when family or caregivers wait until the very last days of life, death comes quickly. But when a doctor tells a patient that he or she should go on hospice care, this means that end-of-life is approaching. It does not mean that it is just around the next bend.

Sometimes patients do stay on hospice care beyond six months. They must be periodically re-certified according to state guidelines. At Hope Hospice, in the majority of situations, the conditions of our longer-term patients generally dictate that continued hospice care is the most appropriate form of healthcare for them.

As pointed out above, determining how long a patient will live is an inexact science. Doctors and other medical professionals give us their best evaluations and we do our best to make each patient’s end-of-life experience as comfortable and pain-free as possible.

Learn About Hospice NOW

Why do people wait so long to learn about hospice? Is it because we don’t like to talk about death? Is it because hospice doesn’t get the media attention that other types of health care do? Is it because we think we know what hospice is… sort of?

Before you go out to a nice restaurant, you look at online reviews and menus. When you are planning home improvements, you ask your neighbors about their experiences with kitchen remodelers, etc. Before you take a road trip with the family, you make sure your car or truck is in good running condition. When you’re planning to go shopping, you check the mailer you received for specials and coupons.

We all make preparations for life and its big events. Isn’t the end of life a big event? Why do we put everything related to death off until the last minute? You and I are both destined to die. Mortality is certain.

You may have given thought to what you want to happen to your body after your passing. Burial? Cremation? Donation for medical research? If that’s the case, then why would you not give some thought to last few months of your or your loved one’s life?

Here is a scenario that happens too often: A doctor tells a patient that treatment is no longer having a positive effect and that she or he should prepare to face death. The doctor also encourages the patient to check out hospice care. The news that death is likely within a few months can be devastating—for the patient and the patient’s family. In the fog of this upset, the doctor’s suggestion of a call to hospice is often delayed or, even, ignored or forgotten.

Hope Hospice frequently gets calls from families whose loved one is within hours or days of passing. Had these families known more about hospice and the services provided, they might have called Hope Hospice much earlier in the dying process and received the full range of services.

Even if you and all your family members are in the best of health, you need to learn about hospice and all the services that come along as part of hospice care. When you see an item about hospice in a newspaper or magazine or online, take a moment to read it. Do a web search for local hospices and read the content on their websites. Here is a link to ours: hopehospicestl.com. When a friend or family member talks about experiences with hospice, ask questions.

Familiarity with hospice can help you make good decisions during that period of extreme stress and turmoil that follows a doctor’s diagnosis. It can lead you to ask the right questions as you determine which hospice is the right one for your loved one and your family.

Hospice Thoughts From The Web

Below are several comments about hospice care, collected from forums and blogs around the Internet. The comments reflect a variety of thoughts and concerns. We appreciate the input from all.

“This was a harder decision than I had anticipated even though we have always known my husband would not recover. Having finally made the decision, I find myself much more relaxed than usual.”

“The doctor has to certify that in his opinion the patient will not live more than six months, BUT that does not mean the patient must die in that time.”

“Whereas persons in home health care receive visits primarily from a nurse (additional services such as physical or occupational therapy are sometimes ordered), persons in hospice care receive the services of an entire interdisciplinary team whose area of expertise is end-of-life care.”

“Reframing the goals of care from cure to palliation often helps physicians accept a life-limiting prognosis. By referring a patient to hospice care you are helping to relieve their physical, emotional, and spiritual suffering.”

“The older parent who has been diagnosed with cancer may need help in negotiating her own end-of-life care. The mom may decide she is protecting her son by not informing him of her impending death and (hospice) staff may need to find the right approach to help her understand how essential it is that her son know she is dying.”

“Hospice care enables the individual and their families to experience the final stage of life together, in the setting most comfortable for them. In most cases, the person remains at home, close to family and friends while under professional medical supervision.”

“Hospice providers have consistently achieved very high consumer satisfaction ratings despite the reality that most of their patients die.”

“Even though the doctor thinks she has only 6 months, I have seen people live for years after being put on hospice. Because the care is so good people sometime get better for a while.”

“Some families who do choose hospice care often do so only for the last few days of life, and later regret not having more time saying goodbye to their loved one. To ensure that your family understands your wishes, it’s important for anyone with a life-limiting illness to learn all they can about hospice and palliative care and discuss their feelings with loved ones before a medical crisis strikes.”

“For those who are not familiar with hospice, it is both an approach to patient care and a philosophy focused on end-of-life care. The goal is to help those facing terminal illnesses deal with their pain, whether it is physical or emotional. The help includes pain management, counseling, helping clients get needed medical devices and the like.”

“If you have family members needing hospice care, please learn about it and help them get the needed care.”

These comments do not tell the whole story of hospice, but help illustrate some aspects of hospice care and those who provide it. We encourage you to learn as much as you can about hospice. You can get plenty of information from the Internet. You can also find out about hospice by talking to those whose family members have been on or are on hospice care.

Our staff is prepared to answer any specific questions you may have about the services offered by Hope Hospice, as well as your questions about hospice care in general. Don’t hesitate to call. We will put you in touch with someone who can help. Call Hope Hospice at 314-984-9800.

Find us online at HopeHospiceSTL.com.