Closure.org Blog

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?

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 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 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?

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.

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 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.