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.

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 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.