End of Life Wisdom
advice to the living about dying
  • Home
  • About Us
  • Advice Column
  • Glossary
  • Resources
  • Contact Us
  • Blog
  • READING LIST
  • Articles

April 27th, 2016

4/27/2016

0 Comments

 
We have seen too many people die without advance directives.  We have seen families blown apart because of different opinions of what their parent's, spouse's, child's, friend's end of life wishes were. 

Take the ASK 3 Challenge. Ask three people if they have advance directives (living will, healthcare proxy, durable power of attorney, DNR etc)...and then ask them to ask 3 people.   The questions are simple.  Do you have advance directives? Do your loved ones know your wishes? What do you want your last days to look like?

Only one-third of American adults have advance directives. The most frequently reported reason for not having one was lack of awareness. We can change that statistic. We are hoping to open the conversation about end of life wishes.  Talking about death and dying does not make it happen.  Talking about end of life wishes can insure meaningful end of life experiences.

Please join us and take the ASK 3 Challenge....and share your stories on our Blog Page and/or Facebook page.


0 Comments

Doctors struggle with advice on dying                                                           

4/15/2016

0 Comments

 

By Felice J. Freyer
Boston Globe StaffNearly all doctors believe it’s important to talk with patients about the care they want in their final days. But most physicians work in systems that provide little help, and often they don’t know what to say or when to say it, according to a survey released Thursday.
The findings come as Medicare begins paying for end-of-life conversations and as many aging people fear spending their last days tethered to machines in a hospital. Questioning a representative sampling of 736 physicians in 50 states, the study identified an array of barriers, practical and emotional, to having the painful talk about care near death.
“These conversations are just insanely difficult, whether in the emergency room or the hospital or the office,’’ said Dr. Ziad Obermeyer, an emergency physician and Harvard Medical School professor, who was not involved with the survey. Obermeyer’s own research has shown that physicians play a critical role in end-of-life decisions.
The new survey found three-quarters of physicians believe they are responsible for initiating end-of-life conversations. But almost half frequently or sometimes feel unsure of what to say.
The results ring true to Dr. Richard Lopez, senior vice president of population health for Atrius Health, a large Massachusetts medical practice. He noted that two-thirds of survey respondents cited lack of time as a barrier. “The time pressures are real in primary care practice,’’ Lopez said.
Lopez also identified with the 60 percent of doctors who said they often failed to raise the issue because they weren’t sure the time was right. “If you have [the talk] too early, it may not be meaningful or clear enough,’’ he said. “If you have it too late, they’re struggling with their illness and may feel . . . that you’re giving up on them.’’
Most doctors in the survey, 95 percent, support the Medicare reimbursement for end-of-life conversations, and 75 percent say the new benefit, which started in January, makes them more likely to have those conversations. But only 14 percent had billed for such conversations in the first two months.
Supporting the benefit but not billing for it “just seems to me like a huge, huge disconnect,’’ said Dr. Anthony Back, codirector of the Cambia Palliative Care Center of Excellence at the University of Washington, which is connected with one of the survey’s sponsors. When patients fail to find doctors or nurses ready to discuss their wishes, he said, they often end up in an intensive care unit with tubes down the throat and intravenous lines in the neck.
Doctors should start talking in a general way with patients when they first seek any kind of care, Back said. When the patient develops a serious illness, those conversations should resume, with more intensity as the illness progresses.
The early talks might focus on patients’ values and how they would like to spend their final days. After patients become seriously ill, doctors can start addressing specific questions, such as whether they will want a feeding tube or ventilator.
Terry Fulmer, president of the John A. Hartford Foundation, one of three foundations that commissioned the survey, said advanced care planning — the process of documenting treatment wishes and selecting people who can speak for a person who is incapacitated — “is not just an extra . . . it’s just as important in its own way as chemotherapy or surgery.’’
The survey included only doctors who regularly take care of patients 65 and older. Three-quarters see many patients who could die within a year. The majority were primary care doctors, but the survey included 266 physicians who specialize in pulmonology, cardiology, or oncology.
Although many doctors are unsure about what to say to seriously ill patients, only 29 percent have had formal training in conducting these end-of-life talks. The same small percentage work in a practice or health care system that has a formal way of assessing patients’ end-of-life wishes. Yet those who receive training and institutional support are more likely to have end-of-life conversations.
Electronic medical records could be a big help, but fall short for a large minority of doctors. The electronic records can flag whether patients have documented their wishes for care, but only 59 percent of physicians reported using such a program. Among those, only a little more than half are able to read the patients’ wishes.
Dr. Lachlan Forrow, director of ethics and palliative care at Beth Israel Deaconess Medical Center in Boston, called the survey results a helpful guide. “We’re not going to solve the problem until we understand it more deeply,’’ he said.
Forrow saw in the findings evidence of a culture shift. Few doctors said having end-of-life talks is not their job, a response that would have been commonplace years ago, he said. He was also heartened to see that, when asked about the value of such talks, most doctors mentioned a desire to honor patients’ values and prevent unnecessary and unwanted hospitalizations, and fewer listed saving money as a goal.
Conducted Feb. 18 to March 7 by PerryUndem Research/Communication, the survey was commissioned by the Hartford Foundation, California Health Care Foundation, and Cambia Health Foundation. The foundations intend to follow up with focus groups of physicians, nurse practitioners, social workers, physical therapists, and others who work with seriously ill patients.
Felice J. Freyer can be reached at felice.freyer@globe.com.

- See more at: http://edition.pagesuite.com/popovers/article_popover.aspx?guid=bf1c8984-f692-425c-bbc1-d6dea89bf3f7#sthash.KxZjts6c.dpuf
0 Comments

Dementia Addition to Living Will

10/23/2015

0 Comments

 
  Time For An Update?     With all of the information now available, is it time to update the standard form of a living will?     In January of this year an article in the New York Times started me on this road.  “Complexities of Choosing An End Game For Dementia” was written due to Jerome Medalie, a lawyer, who took dementia into consideration when writing his health care directives.  His motto is, “If I’m not me, I don’t want to be.”     As we all know, this disease can cause a prolonged period of complete incapacity, years in a state of lingering death.  While the current state-sanctioned and offered Living Will forms are fine for what they cover.  However, dementia affects 30 percent of us over the age of 85.  In its late stages it is hardest on our loved ones.  Many are now in search of a new “End Game,” and additional instructions are necessary.      Language would be needed to specify an irreversible and substantial loss of cognitive as well as physical abilities.  This should be followed by examples of what you feel would create a situation where you would have no quality of life, i.e. be unable to recognize or interact with your loved ones, have a complete lack of awareness of your surroundings, and/or not be able to participate in your own care.      To the extent that the law allows, you would be authorizing your health care provider and agent to follow your wishes to withhold or withdraw life support systems such as cardiopulmonary resuscitation, artificial respiration, and means of providing nutrition and hydration.      Our knowledge of this particular affliction gives us an opportunity to expand the current Living Will form.   We can specify what we would deem to be our quality of life issues and end our lives within a framework of our own choosing rather than allowing the disease to dictate.       Until the states’ forms are amended, if this is something you wish to take into account when creating or amending your living will, then legal advice is advisable.       Hopefully, in the not too distant future, all issues will be included to enhance the ability to express our wishes and make our end of life as comfortable and dignified as possible, while at the same time removing the burden from those who love and care for us.                               
Louise Kaminer LCSW                                                                                       
Stamford, CT
0 Comments

3 TASKS FOR VISITING THE SICK AND DYING

3/31/2015

0 Comments

 

1. LISTEN WITH YOUR WHOLE SELF
2. SPEAK FROM THE HEART
3. BE PRESENT WITH WHAT IS HAPPENING IN THE ROOM
0 Comments

ASK 3 Challenge

11/26/2014

0 Comments

 
ASK 3 CHALLENGE

Do you have advance directives?  Do your loved ones know your wishes?

Take the endoflifewisdom.org ASK 3 Challenge.  Ask three people if they have advance directives (living will, healthcare proxy, durable power of attorney, DNR etc)...and then ask them to ask 3 people.

Only one-third of American adults have advance directives. The most frequently reported reason for not having one was lack of awareness.  We can change that statistic.  We are hoping this will go viral and help to open the conversation about end of life wishes.

Please join us and take the ASK 3 Challenge.   Keep us posted on how your ASK 3 experience was.

0 Comments

Hopeless and Helpless

11/3/2014

0 Comments

 
The Word "Now"
11/10/2014

One of the most important words used in end of life communication is "now".  By putting "now" on the end of a sentence one can manage to cope with what is happening in the present.  Fear can easily replace calm when facing the vast unknown.  Asking one how they feel now is manageable.  Asking how one feels in general is open-ended and leads to projection of the future which is uncertain.  Inevitably we are okay now.  Even if tied to the tracks with a train coming we are okay "now".
What are your thoughts about and experiences with keeping the dialog in the present?


Hopeless and Helpless
11/03/2014
I have recently received letters from people who were feeling hopeless and helpless as they witnessed their loved ones decline.  These are common feelings that come with a sense of loss.  With change comes opportunity.  At end of life there are many opportunities that can change helplessness and hopelessness into compassionate service.

Hope is
desire, expectation, goals, that sometimes involve a plan and or a design and almost always about things in the future.   Staying in the present and being present for someone is a great gift.  There is much uncertainty at end of life.  Hope for a prognosis or diagnosis to change is usually futile however hope for "dying well" (Ira Byock, MD coined the phrase) is often achievable.   One can still hope that the time that is left is peaceful and without suffering.

We think we are helpful when we are
useful, constructive,
and informative.  All of those things are invaluable although they may take a different form.  One feels helpless when one cannot change the outcome or control the situation.  One thing friends and family can do is to allow someone to die in their own way.  The following are other "helpful" actions that can be taken:
    1. Investigate that the decline is not caused by a treatable medical condition or depression. 
    2. Validate what the person is feeling without trying to talk them out of their feelings.
    3. Explore the person's end of life wishes and make certain they are known and documented.
    4. Be present for and with the person.  Often being present and being able to sit with the silence is most challenging and                healing.
    5. Engage the person in life review.

Feelings of helplessness and hopelessness are real.  How one responds to them are the key to compassionate service to another.



0 Comments

    Archives

    April 2016
    October 2015
    March 2015
    November 2014

    RSS Feed

ADVICE COLUMN

Responses to questions about end of life challenges and issues answered by hospice professionals and posted on the website.


ARTICLES

Informational essays, research papers, inspiration, and learning from a variety of sources.


End of Life Wisdom
Advice to the Living about Dying


Copyright © 2014
End of Life Wisdom. 
All rights reserved.
GLOSSARY

Definitions of end of life
terms frequently used by healthcare professionals.


RESOURCES

Links to sites with
information about hospice, advance directives, care-giving, death and dying.