Closure.org Blog

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.

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.

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?

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 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 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 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 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.

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 Rachel Seltman

The easy part of the answer is that accepting palliative care does not mean giving up hope for a cure.  Palliative care addresses the symptoms of a disease.  It does not address the underlying cause of the disease, but many people receive treatment for symptoms and treatment for the disease at the same time.  Someone undergoing chemotherapy to try to cure their cancer may also receive palliative care such as medication to treat pain associated with the cancer.

Whether choosing hospice means giving up hope for a cure is a slightly more complicated answer.  Hospice usually is restricted to patients expected to live six months or less (sometimes 12 months or less).  So going to hospice means accepting that you will likely die within the year.  However, some hospice programs (and insurance companies) allow a patient to continue to receive curative treatment while they are receiving hospice care.

All of the above is important to know, but it isn’t enough to answer the original question.  The above all assumes that the only “hope” is for a cure.  The first time I questioned that assumption was watching the Closure 101 module, “A Primer on Palliative Care.”  As the narrator mentioned “hope of a peaceful dying process,” I realized how limited my understanding of hope had been.  A person in hospice may or may not still hope for a miracle cure, but that is not the only kind of hope.

By Jonathan Weinkle, MD

It’s been nearly forty years since Robert A. Heinlein wrote the novel Time Enough for Love, in which the immortal Lazarus Long comes to the realization that he is terminally bored. The two-thousand-year-old Long finds that he has exhausted the experiences that make life interesting and worthwhile, and wants to do the one thing that his unique genetics and repeated rejuvenation treatments render impossible—die.

We don’t live as long as Long, yet coming to the end of our much shorter life spans we also seem to find that the color has drained out of life in much the same way. Passion, fascination, and anticipation are replaced by a seemingly endless cycle directed solely at trying to extend life, without trying to fill it with anything.

In caring for the terminally ill, the very old, and others who are approaching life’s final scene, we have begun at last to think about quality of life, and now through palliative care and hospice arrangements are addressing pain, shortness of breath, nausea, and other distressing symptoms. It seems to me that among these symptoms that require our attention should be loss of purpose. Whether resigned or resistant to the idea of dying, each of us ought to feel that we still have a role to play in the world in the time remaining. What that role will be depends on the soul and may be limited by the sickness, but it may still be fresh and surprising: inventor, sage, pundit, lover, agitator, peacemaker, poet, or parent. Often it is in the closure of relationships long-strained, or in the uttering of words long-suppressed.

Long’s caretakers, “daughters” many generations descended from him, brightly encourage him to see that he has “time enough for love,” to find a purpose and passion that remains new and exciting. We should likewise be filling our loved ones, not just with medicines, but with meaning for each and every day they have left.

By Jonathan Weinkle, MD

The supposed impossibility of predicting what will happen to a patient is one of the major reasons that doctors and nurses shy away from talking about prognosis with patients (see the "Prognosis" module in the "Closure 101" section of this website).

Perhaps part of the reason that patients and families do not access hospice services until near the very end of life (median hospice stay in the US is 18 days from enrollment to death) is because the getting Medicare to cover hospice care requires doctors to have a crystal ball after all. A physician must certify that a patient has a prognosis of 6 months or less if the illness were to run its normal course. Even using the "surprise test" (i.e. "Would you be surprised if this patient died in the next six months?"), physicians are very hesitant about making this prediction. Either they don't wish to do so in the presence of the family (lest they be seen as "giving up," "losing hope," or simply frightening the family), or they don't wish to put on paper a prediction that might, Heaven forbid, be wrong.

Closure came into being with the lofty goal of becoming a "social movement" with a goal of changing expectations for end-of-life. The change we were seeking was that patients and families could comfortably expect that the care they received at end-of-life would be of the highest quality and consistent with the most evidence-based standards available.

In that vein, there now seems to be a movement afoot to rethink the arbitrary 6-month hospice requirement, in order to excuse doctors from doing something they admit they're lousy at (predicting the future) and get back to the core skills of their profession – relieving suffering and caring for patients in the way that best suits that patient. I have read one too many non-fiction accounts by physician-writers of "The patient who failed hospice." People don't "fail" hospice – but hospice occasionally fails them when it sets arbitrary requirements for who can use it and who can't. Hospice providers become, ironically, victims of their own success when someone survives their 180 days peaceful, comfortable, and still kicking, and the next kick is the one that kicks the patient off the services that have been providing them quality of life for half a year.

Time to review the evidence and revise the rules, I think.

But what if it isn't news?

What if the unpleasant facts, the inconvenient truth, has been there in the open for a very long time, but left unspoken? What if there is an elaborate effort being made to behave as if everything is OK, or will be made OK, when it is very clearly not?

What happens when you realize that it falls to you to speak the truth?

And what happens when the person who needs to hear the truth you have to tell them is someone you care about?

This is what happens when people die in sickness and in old age. And for those who find themselves in the position of needing to say the unspeakable, to point out that the sign over the door says "Cancer Center," or to call attention to the fact that the dinner tray has been sent back untouched every night for a week, here is what happens:

You don't wait a second longer. If you don't speak the truth, someone else will do it more clumsily and cruelly than you would have.

You don't delude yourself into thinking that you are doing anyone any favors. There will be sorrow. There will be tears. There may eventually be understanding and acceptance, but you are doing the dirty work. Expect to get dirty.

You don't swing your words like a sword or a club, cutting or bludgeoning people with them. Hold a hand, and press it, firmly but gently against the truth. "I am here and holding you tight, but you need to touch reality, run your fingers over the surface of sorrow, sense the thing that you have been denying all this time – and then I will hold you tight some more."

You don't expect an immediate reaction. Babies and toddlers fall, bump their heads, and often look around to see how others are reacting. If you are calm and compassionate, maybe there is no meltdown. Or perhaps the pain is so acute that they enter the silent scream, gathering strength to wail with all their might. You must be ready for either.

You don't walk away. You are at the bedside, the graveside, the fireside when you are needed, to continue holding that hand. You can be remembered as the one who shattered hope, or you can be remembered as the one who carried the burden as the survivors woke from an impossible dream and began a painful journey toward acceptance and reintegration.