Closure.org Blog

By Jonathan Weinkle, MD

Joe Klein has spent most of his adult life on the presidential campaign trail, reporting for Time magazine on presidential politics.  He asks hard questions and provides sharp analysis of both Democratic and Republican candidates.  One wonders if, in 2012, he will have a new, difficult question to ask, born of his recent personal experiences.

Klein’s parents recently died, each of them after the long series of illnesses that typifies how older Americans die in this day and age.  His mother succumbed to pneumonia in the end, and his father to kidney failure.  In a recently published Time cover story and accompanying video, he discusses the experience.

Nothing Klein says will be news to anyone who has recently experienced the death of an older loved one.  Procedures were done, like repeated lab draws and placement of a feeding tube, that did not add length of life, but did add to the burden of suffering.  The feeding tube was placed because when the doctor in Pennsylvania called Klein in Chuck Grassley’s kitchen in Iowa and said, “We have to put in a feeding tube or we’ll lose her,” he felt like he didn’t really have a choice at that time.  The whole truth of how soon Mrs. Klein was likely to die didn’t come out until after the time was already in.

By Jonathan Weinkle, MD

A response to a news item about Dan Chen’s Last Moment Robot

So long as it doesn’t drown you in food that you cannot taste and your body can’t use

By Jonathan Weinkle, MD

Every doctor and nurse knows what the vital signs are. There are four of them: pulse, respiratory rate, temperature and blood pressure. They are called vital, meaning crucial. Meaning alive. Meaning essential – both to the patient, who cannot live without them, and to the medical system, which cannot function without them.

More recently a fifth vital sign has been added: oxygen saturation. Surely to a creature that breathes air in order to live this is crucial, too. So there are five vital signs, five numbers that we must know about everyone in order to know anything about them at all.

That is, until they are dying.  When vitality is about to be extinguished, how vital are the vital signs? How necessary, how crucial, is it to awaken the old man from a peaceful sleep to discover these formerly all-important pieces of information?  When all have understood that death is approaching? After all, if we find the vital signs are abnormal, that there is a fever, or elevated blood pressure, or slow breathing, what will we do?  Will these bits of data tell us anything other than what we already know – that the end is near?

Michelle Anderson

After she had experienced a few stays in the intensive care unit, I spoke with Sharon, a family member, about her preferences for care at the end-of-life. If she was ill again and things did not go as we'd hoped, what would she want? If the doctors aren't able to wean her off the ventilator, what should we do? She responded by saying "You made the right decision last time."

Several years passed by and fortunately Sharon was in good health. My husband and I recently saw Sharon at Thanksgiving along with our extended family, including Aunt Jean, who was feeling slightly under the weather with a cough. Thinking that it was nothing but a cold, my husband and I gave our ritual hugs and said goodbye. As we left, we smiled when we thought of her cheerful personality and the spunky glitter hat she was wearing, which fit her to a T.

By Marian Kemp

Talking about care at the end of life is not easy. Yet communicating wishes for care in the final months is important. It helps to ensure wishes are honored and eases the burden on loved ones.

Seriously ill patients and/or their families may hear of a document that can help ensure that an individual's health care treatment wishes at the end of life are respected. This document, called the Pennsylvania Orders for Life-Sustaining Treatment or POLST, was approved for use in Pennsylvania late in 2010 by the Secretary of the Department of Health (DOH).

The POLST form is recommended for persons who have advanced chronic progressive illness and/or frailty, those who might die in the next year, or anyone of advanced age with a strong desire to further define their preferences of care in their present state of health. To determine whether a POLST form should be encouraged, healthcare professionals ask themselves, "Would I be surprised if this person died in the next year?" If the answer is "No, I would not be surprised", then a POLST form is appropriate.

By Stefanie Small

The Chevra Kadisha (Ritual Burial society) has been part of my life for as far back as I can recall. My parents are longtime members of this volunteer group of people who, as part of the Jewish tradition, prepare the deceased for burial. The members wash the person and dress them in shrouds and ready them for the final leg of this life’s journey. It is considered a “chesed shel emet,” a kindness of truth, done for no other reward than the knowledge that someone will do it for them when the time comes.

I became a member of the society about 10 years ago and have never looked back. It is a life altering experience to be part of the conclusion of a person’s existence in our world. The room where the work is done is quiet, almost reverent, as we know that we are the last to wash and dress this person. We are the final people to see the whole person as we place them in their caskets. And it is peaceful and hopeful and a reminder that life is precious.

By Mike Light

We were all winded and drenched in sweat, having just completed a high-intensity workout on a particularly humid June evening.  Lying on the grass, recovering, we began to discuss a common topic for us: nutrition and the best place to buy fresh produce.  Our workout group is composed of six recent college graduates.  We are educated, socially informed, and try to live as healthy a lifestyle as possible.  But while we care deeply about our own wellbeing, in an effort to prolong our lives, we never took the time to think about the end of our lives.

Since I started working on the Closure Intiative, I have become more enlightened to end-of-life issues.  Even though I volunteer as an Emergency Medical Technician and have helped patients not much older than myself who were seriously ill or injured, it never struck me that someday I could be in a terrible car wreck, or fall seriously ill.  Yet, more than 30,000 Americans 15 to 24 years old die every year, over half from unintentional injury. In the age of modern medicine, many of these deaths are preceded by invasive interventions and aggressive procedures.  So, lying on the grass, I asked my workout buddies if they had ever considered end-of-life care.  What kind of treatment would they want if they wound up in the hospital?  Would they want to be on a breathing machine? Did their families know their values and their wishes?  Were these wishes in writing? They each had strong opinions about what level of aggressive care they would want to receive and how much quality of life they were willing to sacrifice for an attempted treatment.  Perhaps not surprisingly, they did not have their wishes spelled out in writing, nor had they had serious discussions about the topic with their loved ones – the people who would have to make decisions on their behalf if they became incapacitated.

By Adam Conway

During the past year I have had the opportunity to say goodbye to my father’s mother and my mother’s father.  They each died peacefully in their homes with family standing by, and I felt lucky to speak to them in their last hours.  From their perspectives, a long, fulfilling, and successful life was at its end.  My Grandfather had served in World War II, opened and maintained a successful business, and raised a family.  My Grandmother, just months shy of 100 years old, had seen more changes in the world than I can begin to understand. 

Despite the fact that each of them had been aware for many years that they would likely pass on soon, they each had chosen to communicate with my generation in a way that glossed over illness and frailty, although when I asked my grandma for advice last year, she said “Don’t get this old! Then again, I don’t much care for the alternative!” 

This was really the only clear opening I had to speak about her wishes for the end of her life, and my feelings about it, but of course like most of us, and particularly young people, I was unprepared to have such a discussion.  I regret this, of course, and should have trusted her to help me through it.  At the time of her death, she had more experience with loved ones dying than anyone else I knew, since she had long outlived almost everyone she knew, and could have been a wealth of knowledge on the subject.

This experience has made me aware of the need to learn about the options that are available and for planning in advance, both for myself and my family members.  Despite the emotional difficulty of such discussions, I realize now that I must take advantage of the wealth of information held by people like my grandmother: wise people who have had more experiences than I can possibly imagine. 

By Hilary Kramer

For the past five-and-a-half years, I have worked for a small hospice, in a community where everyone seems connected by some thread.  Hospice work is a very rewarding field; we often get to know one patient and family, and then later provide care for other family members who are referred to us.  This community seems to be getting a handle on what services are available and are utilizing that information in order to better deal with the process of death and dying. I am in awe of the way this community is connected to one another for the greater good.

Given my background, it should be easy for me to discuss the subject of death.  Some families never talk about death, as if it will never happen if we don’t say the words.  Others seem to talk about death as an “if.”… And still others seem to have an ongoing dialogue for years and discuss every aspect of an illness and funeral. I have found that everyone starts at a different point.  There is no wrong way to start a conversation, no matter where it begins.  It is my job to work from every starting point and help as if each person and family is starting from the beginning of the conversation and process of dying.

It seemed strange, then, that I found myself talking to my siblings about hospice for my father, who was 90, and dying from complications of Alzheimer’s disease.  He was diagnosed only six years ago, but thinking back there were signs before then that we chose to ignore, because my mother was the one caring for him on a daily basis.  My mother passed away quickly one morning, which left us to try to figure out what to do for dad, while grieving for her.  I flew to Florida, as did my two brothers, and began the daunting task of trying to figure out where to begin.

By Toni Steres

My grandfather is dying.  I tear up just typing that sentence.  He was diagnosed with pancreatic cancer in August of 2010 and without going into details, was given 6 months to a year back in December of the same year. 

As a registered nurse, I know how important it is for patients to make end-of-life decisions before you actually need them.  I have many stories of patients who planned ahead—and ones where patients did not.  As you can imagine, those who did not left their families in turmoil—“What did he want to have happen?  Do you know?  Does anyone in the family know?”

I hoped that my grandfather, being a planner himself, would be willing to discuss this with me.  But the denial stage of grief is a powerful thing.  When I first brought up the thought that plans needed to be made—he cringed and changed the subject.  Later, he told my father that it depressed him when I brought up the subject. 

From the John A. Hartford Foundation Blog

By Amy Berman

Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine.  Was it the spread of cancer?  My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.

A few days before the procedure, I went in for preadmissions testing.  As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV  diagnosis. No, her question was merely standard procedure.  I said yes, and shortly, a specially trained social worker arrived to walk me through the process.

A cheerful young woman reminiscent of a camp counselor sat down next to me with papers neatly attached to her clipboard.  The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated.  Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother.  Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.

By Dr. Jonathan Weinkle

The longer I discuss end-of-life, the more stories I hear, the more nuanced my view becomes.  Last month I facilitated a fascinating discussion that was meant to open an honest conversation about death and dying, to break down what I often call the Brighton Beach Memoirs approach to death – that is, whispering the word out of fear that, if we say it out loud it might happen to us.

The discussion ended with a personal story from one of the participants who was dying – her words, and her doctors – of a liver abscess two years prior, only to come back “escaped to tell thee” like one of the messengers coming to Job.  What had saved her was a surgery that had one chance in a hundred of succeeding, and who knows what chance of leaving her dead on the operating table.  Why was she undergoing the surgery?  Her daughter insisted that, “If she’s going to die anyway, why don’t you operate?  What have you got to lose?”
Sounds like anathema to the usual message of “caring before curing,” doesn’t it?  Yet it is hard to argue with the outcome of this previously dying woman who walked into the room under her own power, sat attentively in a lecture and discussion for an hour, and chose this moment at the waning of our hour to articulately tell the story of how reports of her death had been greatly exaggerated.

Heaven forbid, if someone you loved was suffering from a stroke, you’d want them cared for somewhere where they would get the state-of-the-art care, right?
The Joint Commission (TJC) has certificate programs to recognize hospitals that meet or exceed the standards for stroke care; if your loved one is admitted to such a hospital, you get the reassurance of knowing they have TJC’s endorsement.
Now, what if your loved one was suffering from severe pain, anxiety, shortness of breath, or having a crisis of faith as a result of the treatment for one of the diseases above?  Wouldn’t you also want state-of-the-art-care for those problems?

End-of-life care presents emotional, physical, and financial burdens for patients and their loved ones. At the Jewish Healthcare Foundation (JHF), in Pittsburgh, we have become somewhat fixated on the fact that the health care system too often fails families and patients at end of life. Unfortunately, failure is what most people expect. But JHF end-of-life initiatives in the Pittsburgh area are showing that better realities are possible.

Recently, the Dartmouth Atlas Project released its first-ever report on cancer care at end of life, which showed that one in three Medicare cancer patients spends his or her final days in hospitals and intensive care units (ICUs), an indication that many clinical teams aggressively and often futilely treat patients with curative care close to the times of their deaths. The report suggests that we are underutilizing hospice and palliative care, which receive high marks from families and patients at end of life.

By accessing www.closure.org, you have made a powerful decision to educate yourself about end-of-life issues and care options. Dying is an uncomfortable topic to consider… no matter what your age. But it’s an important matter to discuss with family members and healthcare providers. You need to know what you want, and what you want to avoid, in the event that your time becomes limited.

There is a great deal of information available about end-of-life. In fact, it can be quite overwhelming. This Web site is designed to simplify that information. We’ve developed simple, easy-to-use online educational materials, tools and resources to help you make informed end-of-life decisions that are consistent with your values and beliefs.