Why palliative care and hospice is the ultimate gift

Dear Doctors:

I am writing no less than 45 days after my mother died from a GI bleed from ovarian cancer.  Not once did my mother’s team of doctors mention palliative care.  It was not until days and even hours before her death that hospice was discussed and implemented. Our family was blindsided by this.

While no one likes to talk about the topic of death, it is important to remember that this is a natural cycle of life.  Doctors are always on the cutting edge of medicine and talking about the possibility of death seems like failure.  In reality not talking about the services available to family is the ultimate failure.

Here are the top 5 reasons why:

1.  Pain.  Patients may get to a point where pain is not manageable with the regular visits to the office.  To know that there are potential solutions from a team that understands the full situation and can target medicine toward avoiding suffering is key.  It can make a huge difference in quality of life and the person’s overall attitude toward the options available.  It puts the patient in the driver’s seat.

2.  Quality of life.  Running from doctor to doctor, balancing prescriptions at the pharmacy and not tending to one’s overall quality of life can be draining.  If more attention were paid by doctors to palliative care during serious illness the patient would feel a sense of relief that there is a friend on the sidelines ready to work with the entire team to manage symptoms and if need be start discussing hospice.

3.  Hospice gives the patient comfort at a time of great stress.  Hospice should not be a last-minute option.  It should be done with great thought and care with the patient’s needs in mind at all times.  To be able to stop all treatments and procedures and focus on the remaining days ahead without pain and suffering is often a relief.

4.  Families are grateful for palliative care and for hospice.  The patient’s families are often in the dark about these services.  Their stress on trying to do the best for their family member is truly overwhelming because they worry about what they can do to help.  Knowing that these services are there is half of the battle.  Even if they are not going to be needed in all likelihood, families deserve the right to know about them.

5.  Dignity.  While we are so busy “fixing” the patient we should also look to giving that person a sense of dignity.  No one wants to suffer in death.  Patients want the ability to have time with their family members and to peacefully convey last words and more.

Consider creating a simple sheet describing palliative care and hospice and handing it out to patients as they start treatment for a life-threatening illness.  Make it clear that you plan to do all that you can to help them but in that same vein you also want them to be completely informed of their rights to extra services should the illness become complicated.   More often than not, you will find patients and their families grateful for the “road map” for their full treatment, successful or not.  It is the ultimate gift.

Deb Discenza is co-author of The Preemie Parent’s Survival Guide to the NICU and the founder and former publisher of Preemie Magazine.

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  • Denys Yeo

    You make some very good points in this post. Where I live
    (Dunedin, New Zealand) a person can be referred for Hospice services if they
    have a life expectancy of around twelve months or less. I was referred to the
    Hospice half way through 2011 and while I have not yet required a significant level
    of support it has been reassuring to know that these specialists are ready to
    step in and help when the time is right. I receive a call from my support
    person about every two weeks and we discuss issues such as pain management,
    family stresses and how my treatment plan is progressing. I am sure that having
    Hospice back up has been an important factor in my being able to maintain a
    reasonable quality of life – so I agree it is an option that should be made available
    to anyone with a life threatening illness early on in the progression of the
    disease.

  • Anonymous

    Deb-I am so sorry you and your family had this experience. Unfortunately there are a lot of misconceptions about offering hospice, on both sides of the issue: “If I tell her about hospice, she will think I have given up on her,” or “she will think she has only X months to live,” or “Hospice will control everything/make me take medication/drug me” and on and on. As a former OB nurse, where I was honored to be a part of bringing lives into the world. As healthcare providers, I think we have an obligation to assist people with their exit as well. Many patients and providers are adamant about birth plans. Shouldn’t we have death plans when we can? Yes, we should, for the five reasons you describe.

    I didn’t know much about hospice prior to my experience. My mother died of peritoneal cancer in 2006. After surgery and five years of intermittent chemo, she had reached the point where her kind and compassionate oncologist told her there was nothing more he or science could do for her. He encouraged us to contact hospice, even though she was feeling relatively well at that point. We got my mother’s buy-in by telling her (truthfully) that she just had to learn about the process; we would not commit to anything she didn’t want. We had an initial meeting where the process was explained by an admissions nurse. She eloquently stated that hospice wasn’t there to help you die; it was there to help you live the best life you can for your remaining time. Over the next six months, the RN case manager and daily nurse’s aide became part of our family. As my mother’s (and our family’s) needs gradually shifted, they were always there with a solution or advice. She had a prescrption filled for morphine, but miraculously, had no pain. My mother died in her bedroom, wearing a favorite nightgown, on a sunny June afternoon.

    Whenever I hear of someone with an end stage disease, I am a vocal proponent of the hospice and palliative care programs, and encourage them to ask their doctor about it. You said it best: “Not talking about the services available to family is the ultimate failure.”

  • Anonymous

    Your statement, “not talking about the services available to family is the ultimate failure,” is a battle cry.  One third of hospice patients are admitted less than seven days before they die because doctors have not been supporting them earlier in the process.   

    I recently sat at the bedside of a friend dying of cancer.   It began as stage 4 and his doctor was aggressive.  He agreed to the treatment but at no time did the doctor broach palliative care and when I did, the patient chose to follow the doctor’s advice.   Four days before he died he was scheduled to have a surgery to repair a bone that broke in his arm and a colonoscopy.

    His brother arrived from another state and told him it was time to stop.  Then he entered hospice care, which took two days to implement and he died two days later, too weak to leave the hospital to die in his own bed.  Because he was not told to prepare, my friend had not taken care of some business that would have reduced his wife’s suffering.

    What will it take for medicine to not acknowledge the inevitable arrival of death, to help us prepare for it, and to ensure that we experience it in comfort and dignity?

  • http://pulse.yahoo.com/_PXM4TW63WX6JNX65PLYR7VASFQ Patricia

    This is such a damaging lack in medical treatment; the hurt it causes to families is immense. If a person thinks he/she can get better but is really dying, the family misses a huge opportunity to heal, to say goodbye, so say: I love you.

    My father had a rare bile duct cancer. His surgeon told him and his wife that he got the tumor. My father was given a horrible Wipple procedure and spent many months of his last year recovering from this, all the while thinking he was getting better but not knowing that medically this operation is considered palliative in the case of this type of cancer.

    I was with him in his last days; hospice was not even mentioned until he was delirious on his hospital deathbed. His wife wishing for a miracle. Much denial going on; and if hospice could have been enacted months earlier, my father could have died at home, his wife would not have had the sole responsibility for taking care of him, and old family wounds could have been healed to some extent. We were also blind-sided.

    My sister died 18months later; she had hospice because she was told about it. She was able to die at home, in her room, with her family around her. The service could have been better especially in the after-death care (help with bereavement, as this loss sent my family into long lasting despair as no one knew how to handle the loss, especially not her children).

  • Melissa Boling

    Absolutely!  I am a hospice nurse, my mother died with hospice, and my father is currently a hospice patient.  It is so very important to understand that hospice is about living a quality life until death.  Hospice should be brought in as soon as possible so the patient and family can reap the full benefits of the services, which include nurses, social workers, chaplains, and hospice aides, under the supervision of hospice and palliative care certified physicians.  It is also important for patients and families to understand that palliative care is also available for severe but not terminal illness for symptom control.  Multiple research studies have shown that people often live longer when their pain and symptoms are under control.  Patients are eligible for hospice if their doctor certifies that their “life expectancy is 6 months or less if the disease runs its normal course”, and if the patient is no longer seeking agressive treatment.  A person who does better than expected and/or decides to pursue more aggresive treatment may leave hospice at any time and return any time.  It is 100% covered by medicare and most insurance. 

  • Anonymous

    Palliative care/Hospice denied - condition denied  – Denied they exist.   The stories are heartbreaking.   How callous of the physicians or is it the profits that are the drivers.   The families that just don’t get it.

    Why not make the simply one page sheets, put them in one of the slots in the waiting room where health information is kept, right under the Advance Directive simple sheet.  Have them the closest to eye level.  This promotes long term healthcare issues up front and personal and hopefully way before it is all needed.  Can monitor interest by the number that are taken.  

    You don’t even have to provide the Hospice to contact. Just say – for more information talk with your physician.  I appreciate the issue of getting “reimbursed” for such a discussion but it could be short and Palliative/Hospice could, if not already coordinate community services to discuss such issues in groups.  I also think that for profit hospice care companies should be outlawed.  The larger the area one covers the more efficient and effective it is.   Should there be “competition”?   Sometimes it just doesn’t seem appropriate if the one(s) are functioning really well.    

    And the US should really extend it to 12 months. 

    As I know it, there is only one Hospice in the US that covers an entire county as a non-profit.  At that time a Hospice RN attended 66% of all deaths in the county which included accidents, in the hospital, home everywhere.  That’s one index of great service.  At least did the last I knew a number of years ago.  It was through a certificate of need that kept the profitters out.  So, every doctor in the  county was well informed and patients did get referrals much sooner.   Some patients “graduated” from Hospice and some were recertified.   There were probably some patients who only needed someone to come by and check on them but we don’t have any other way to do this in the US.

    Maybe finding another name or always putting Palliative and Hospice would reduce the stigma.

  • Peter Schwimer

    If you recall, one of the big arguements against Obamacare was the “death panel”. And what did the so-called death panel refer to?  A required conversation between patient and physician about the possibility of hospice care.

    Is it any wonder that providers are hesitent to discuss hospice?

    How sad that healthcare has sunk to the position of not discussing reasonable alternatives.  When my then 90 year old father was recommended for prostate surgery with early stage prostate cancer, I asked his physician what would happen if we did nothing?  The look of utter shock on the physician’s face was telling as he explained “well we HAVE to do something!”  And we did, we went to another physician who agreed that Dad would die of something else, and we did nothing.  Dad lived another 8 1/2 years, the cancer stayed exactly the same. And he passed quietly of something else!

  • D Jarvis

    Deb,
    I’m so sorry to hear about your experience with your mom. Your suggestion: “Consider creating a simple sheet describing palliative care and hospice
    and handing it out to patients as they start treatment for a
    life-threatening illness,” is a good one.

    Instead of a sheet, doctors can hand patients and families an excellent video on palliative care or have them watch it on http://www.palliativecarevideo.com

    All the best to you.

  • Anonymous

    Ms. Discenza: 
         I am in total agreement with what you say about the value of palliative care and hospice at the end of life. I have to disagree a bit with your #4.  Some families are grateful for hospice and palliative care, but many are not only not grateful, they resist the suggestion that comfort care and backing away from aggressive interventions might be appropriate.  With such families – who are by no means uncommon – it’s easy to wind up in an adversarial relationship.  Some will imply – or blatantly accuse – doctors (like me) of being “too willing to give up” or “write off” their loved one who they feel should continue receiving aggressive “care.”  
         It’s particularly frustrating when the healthcare team has made a lot of progress in convincing the family that further aggressive care will be futile and needlessly intrusive, only to have some subspecialist ride in on his/her white horse and announce to the family that giving up is premature and that he/she can treat (tho not fix) this or that problem.  Families often cling to these promises, casting all the “negative” opinions aside.  This reinforces the opinion of many of these families that the rest of us were just too quick to give up on Mom just because she’s too old, or just because she has dementia.   
         At the risk of quoting Peter Schwimer out of context “Is it any wonder that providers are hesitant to discuss hospice?”  There are other reasons, too, some not so patient oriented.  
         From all the other posts it’s obvious that you may be “preaching to the choir” here.  Unfortunately, there are a lot of folks who aren’t in the choir and won’t be easily brought in.

  • Anonymous

    The unfamiliarity of physicians relies on the emerging specialty of pain management, but is more heavily influenced by the dissociation of the patient from the disease state that according to the physician has defeated  the practice of his medical skills.  The dissociation of the patient from the disease state leads to unnecessary pain and suffering of the patient and opens the unethical path of human experimentation, and thus, continues the unethical treatment of the patient where the patient is deprived of any choice of treatments and the end of their life and no dignity and autonomy.

  • http://profile.yahoo.com/XRC4SOLKNTBM5K7E4EXXQ4L3CM Sara Buscher

    Patients should get adequate pain relief and more informative analysis of their options regardless of whether they are dying. They should not have to choose between pain relief and adequate medical treatment of their illnesses. Those of us serving as health care decision makers for our elderly parents should not have to try to find this information on our own or be given untenable choices of either we treat your Mom or we put her in hospice without food and water and wait for her to die.

  • http://twitter.com/howlandhealth Wendie A. Howland

    I hear the “They’ll think we’ve given up hope” as self-justifying. Referral to hospice care isn’t giving up hope. We have different hopes in different situations. When the hope for cure is not to be, then we can hope for comfort, for care, for symptom relief, for someone to care for our loved ones when we are gone, for respect, for control. Hospice gives this. There is no shame to a physician in using it as readily as chemo or surgery.