Hospice is Life

Déjà vu.  I am with the family of a patient who has terminal cancer and we need to discuss end-of-life planning.   We are setting the base before we all meet with the patient, so that questions and concerns can be handled and perhaps avoid conflict.  Everyone understands that the disease is advanced and that further chemotherapy is not indicated.  We all agree on pain control and comfort care.  However, when I open the discussion of how we are going to get the patient home, a family member says, “do not use the word hospice, that means death.”

Now, I am not without empathy.  I know that bringing hospice into our discussion says that a problem is present from which the patient will eventually die.   That is a tough idea.  The problem is that many people confuse hospice with accelerating death.  They think only of morphine drips, stopping needed medicines and starvation.  This common reaction still surprises me.  For I believe hospice is life.

If a patient has a terminal illness for which there is no reasonable treatment, our goal should be to bring quality to the time that remains.  It is vital to understand that the end of life is not about being dead…. the end of life is about living.  If we can control pain, shortness of breath, anxiety and other disruptive symptoms, than there is much to be lived, even in our final days.  We can learn, teach, share, give and love each other.  Who better to guide a grandchild about what she wishes for the child’s future, than the grandmother?  Obtaining quality, comfort and dignity at life’s end is the goal of palliative care and hospice.  With terminal disease the fact of coming death is decided, but the opportunity to live well must be seized.

There are several reasons for the confusion regarding the true goals of hospice.  First, superficially, most people who go on hospice do indeed die.  Therefore, from the outside there may seem to be a cause and effect relationship.  I.E. Go on Hospice …Hospice makes you die.  It may be difficult to see that the patient is living better and perhaps longer.  Second, we often delay in calling hospice to the very end, when things may be desperate with symptoms out of control.  I cannot count how many times I have seen hospice called during the last two days of life.  Then hospice can have relatively little benefit and may in fact have to be very aggressive with medications just to achieve comfort.

I think we can be confused by the legal Medicare Hospice requirement that an estimation of life less than 6 months must be made for a patient to enter hospice. It is important to understand that the 6 months can be renewed without limit.  Occasionally I have seen patients on hospice for more than a year.  Not infrequently “terminal” patients given the quality and support of hospice actually regain their health enough to leave hospice.  Some of them live for years after, or are healthy enough to resume active cancer care if needed.

Finally, I think hospice is confused with death because of the way in which we handle these conversations.  Instead of planning when we are relatively well and have time to discuss end-of-life from a perspective of health, we wait until the last minute.  Then, as everything is deteriorating we suddenly have to mix statements about failing therapy, progressive disease, limited prognosis and terminal care, all at one time.  Thus, we take a short hop from, “you are doing fine” to, “let us talk about hospice.”

Hospice can give weeks or months of quality life to a patient and family.  In addition to controlling symptoms hospice helps with planning and coping.  In this difficult time hospice acts not only as caregivers, but as guides.  This can increase the patient’s independence and assure dignity during this part of their life.  Remarkably increasing data shows that instead of treating a terminal patient with failing chemotherapy, if you just control symptoms the patient will not only live better, but significantly longer.

Hospice can be a tremendous assistance and gift to a patient and family, going through an end-of-life experience.  It provides hope for comfort, quality and dignity.  It brings people together.  This is precious time, which can be lived well.  Life giving hospice can help.


  • Mike
    Having been working and associated with a nursing home (which has a hospice) for many years and your words help with coping with that part of my life. Thank You.
    • James Salwitz, MD
      I'm glad it helps. I have found knowing that there is almost always something we can offer, goes a long way towards balancing what can be a tough job. jcs
  • patricia fleming
    Thankyou so much for your beautiful article.Being a nurse for 30yrs,i have dealt with many specialties over the years and first and utmost,my favorite has always been "Oncology".I have always prided myself on the relationships that i formed with my former patients.and amazingly enough,the patients were more accepting than the families.I am so blessed that not only did they touch my life,but i was able to also touch their's.End of life issues are not always easy to deal with and the family's acceptance is always difficult.There is a big difference between "Quality" and "Quanity".Hospice helps with dealing with the 5 stages of death.Please continue with your blog as i so enjoy reading your articles.
    • James Salwitz, MD
      Thank you very much for your lovely comment ... and for 30 years of nursing service... jcs
  • Maggie
    As a hospice volunteer I have seen several patients 'graduate' and go back to rich, full, lives in stable health. The '6 months' estimate is only an estimate -- and, at that, it's usually only one specialist-physician's estimate of how soon one specific illness will 'likely' kill the patient. Some cancers inexplicably change their growth pattern, allowing the patient more time. Some cardiac problems become less burdensome and may even abate somewhat under good, supportive hospice care. Some potentially terminal illnesses become less dangerous once the patient's (often underdiagnosed) depression has lifted, thanks to good supportive care. The most difficult cases are the ones where the patient has come to hospice late. Too much pain and suffering. Thanks so much for this lovely post!
    • James Salwitz, MD
      I think some of the most fascinating data has shown that for certain diseases (i.e. lung cancer that has failed chemotherapy) that patients actually survive longer on hospice than receiving active anti-cancer care. Thanks for your comment. jcs
  • D Someya Reed
    Why is relief of suffering talked about as it relates only to hospice? If palliative care is used more effectively and earlier (as it should be) hospices would still be dealing with those who are dying but they would already be relieved of much of the pain associated with their condition. In its early days, hospice was thought to be a "fad" that would ultimately be absorbed into the hospital atmosphere. Maybe it shouldn't in light of all the hospital acquired infections and such but good symptom palliation can and should be used anytime and certainly early. The Doctrine of Double Effect applies to all medical professionals, not just hospice. So fear (of some consequence) is an irrational reason for not using palliative measures. Hospices are more likely to abuse this doctrine as they are more isolated from public scrutiny (in people's homes) and have little to no oversight or punishment for their transgressions unless you include Medicare fraud ($). That will be investigated but shamefully little else. Until hospice as an industry can come clean with the public, it will not be (honestly) embraced. The industry does not want you to know that they are audited (surveyed) on average once every eight years. CA and Michigan are worse with each at over a decade. They don't want standardization in the industry using an everyone/every case is different logic to refute attempts to standardize. Therefore, every hospice can have their own set of policies and procedures that the public cannot see or compare to determine which hospice is best for them, given that they even have a choice. Many hospices state they are there to "support, not take over" the patient/family care yet do just that and tell the caregivers they are in the way, don't know what they are doing, are in denial or "pre-grieving" their loss. The industry acknowledges and names this as "hospice arrogance" but appears to do nothing about it when it occurs. Hospice associations promote/market hospice and advocate for governmental change but not for the patient. Check out any of their advocacy pages on changes they wish to see implemented. Advocacy for higher reimbursements, sure, but nothing for direct patient care or protection from lack of care. We know from failures in public education that $ spent do not guarantee improved results. CMS has repeatedly issued responses to what they say are many requests to remove the patient's Attending Physician from the patient's care process. They say this will speed things up but can it be good to take out the one medical person who knows the patient and their condition best? No fines exist for hospice wrongdoings. Conditional level non-compliance with Medicare's Conditions of Participation, 2008 (the billing rules hospices are asked to follow in order to bill Medicare) are broken but don't always result in the ONE remedy CMS has...removal of the transgressor hospice's ability to bill Medicare. Worst of all, the hospice industry does not even have a legally enforceable or standardized Patient's Bill of Rights. Some hospices are now including new verbiage in the Hospice Patient's Bill of Rights (developed by the Hospice Association of America) that is not supported by either the HAA or NHPCO but state that it was the same one developed by the HAA originally. HAA and NHPCO say they are powerless to do anything about it even if the offender is a member. The altered Hospice Patient's Bill of Rights includes text to the effect that a patient may be discharged if he/she refuses to do something (when asked by the hospice) if the hospice feels that the refusal "compromises the hospice's commitment to quality care." The hospice will decide. Not the patient. Not the family. Not the attending physician they want to advocate out of the picture. So if hospice is life and hospice is the something else that can be done when you're told nothing else can be...then hospice has to get it right all the time. Sometimes that will mean confessing that only a little is all that can be done. Confessing that many will die instead of trying to "redefine hope" with the idea that some will leave hospice because they "get better." Some do but it's few. There are many good people working in hospices. There are many good people running hospices. And just as in any industry there are the mundane (it IS just a job, not a calling) and those who absolutely should not be there. Those who are good will ensure that the patient/caregiver/family understand that hospice is for those who choose to let their terminal illness run its course, likely to end in death. Not tell them that hospice is not giving up hope and then never tell them what that means. Especially when they know that "hope" to the dying means "cure" not making up with crazy Uncle Frank. There are no do-overs in hospice. The actions of every hospice worker have consequences that will likely be remembered (good and especially bad) by many and for many years if not entire lifetimes. If "death with dignity" is the mantra, why can't the industry agree on its definition?
    • James Salwitz, MD
      Fantastic insight and thoughts. New Jersey, for example, has hospices from a range of different backgrounds, some for profit, some not, some free standing, some institution based and all are pretty much dependent on their own internal standards, despite the need for CMS inspections. While my bias would be that we are correcting a major problem from the opposite direction (i.e. poor access to end of life care), you are absolutely correct about the need to insure quality and transparancy in hospice care. The AAHPM is trying to move in that direction, as noted in their decision, affective last year, that in order to be boarded in the specialty you need to do a fellowship. jcs

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