Dear Barbara, My husband just passed away. He suffered for several years after his diagnosis. He was in and out of the hospital most of this year. He had been on hospice 6 days.
This is a version of letters I receive frequently. A person has been diagnosed with a life threatening illness, received various forms of treatment for several years, then after a few months in and out of the hospital for various related reasons, comes home with a hospice referral and dies a few days or, if lucky, a few weeks later.
What’s wrong with this picture? A lot!
Diagnosis to treatment to hospice; good. When a person’s condition begins to decline with frequent hospitalizations, in spite of the treatment, it is time to ask the questions, “Are the treatments really working? Are the treatments helping or just causing more physical challenges?"
At this point is when you ask the physician, “What is happening? Is it wise to continue this course of treatment? What are your expectations for this treatment? Are we STILL talking cure? If not, what is your best scenario for continuing treatment? IS it time to stop treatment and talk about comfort care?"
I have to add that this will be a hard conversation. Hard for your physician to answer honestly and hard for you to ask and then hear the answer. You may not want to hear an honest answer. Sadly, many a physician will not give you an honest answer. They will tell you what you want to hear (that they can fix you, that they can keep you alive - no matter what that life is like). For some, it just isn’t in their tool kit to stop trying.
SO, hopefully, the physician says, “We’ve given this disease our best try and it didn’t work. I am offering and suggesting comfort care.” I want to say this conversation happens months before death comes; when there are months of comfort care, when there is living life —— living life in the best possible way within the confines of your body and disease limitations. When there is time to do and say, to experience, to smile, to enjoy.
Unfortunately, the referral to comfort care generally comes not when there are months to live your best life but when there are only days or at best weeks of living left. So the obvious question is when is a good time to get hospice or an End of Life (EOL) Worker?
* When the physician says treatment isn’t working. (We’ve already addressed how that doesn’t generally happen).
*When a person’s condition continues to deteriorate in spite of treatment and hospitalizations.
*When you as a caregiver look at your loved ones’ living and say to yourself or are afraid to say out loud, “I’m scared. They aren't getting better, are they going to be here next year?”
These questions and scenarios will occur months before death comes. In those months hospice and EOL Workers can help you and your loved one live the best you can. In those months they can help you live your gift of time to its fullest.
It is in the months before death that hospice can do their best work of addressing living. It is in the weeks and days before death when hospice enters that they only do crisis intervention. Crisis because family didn’t expect death to come so fast, didn’t know what approaching death looks like. Crisis because of the fear of what is happening and the questioning 'what do we do while it is happening' is at its highest.
A hospice referral months before death comes is about education of what is happening and what to do. It is in the months before death that a rapport is built, a trust is developed, knowledge is gained.
Something More about... When To Choose Hospice
We need to have all the information possible about our disease so that we can make the right decision for ourselves. Dying is a communal event. It is about words, touch, goodbyes, I wish I had, if only. It is not about medications, procedures and protocols but it is about comfort, pain management, positioning, mouth care, bladder and bowel attention. Dying is about humanity, about people, about hearts breaking, sobs and tears, unanswered questions, why didn’t I, why didn’t you, about guilt and forgiveness. Dying is about opportunities if we will take them. If you or a special person is facing end of life, my dvd kit, NEW RULES for End of Life Care can help you know what to do, what to expect and to have a more sacred experience.
5 comments
Laura Jenkins
This article, and the comments, are so lovely and loving.
Another complication in the scenario is being a patient of a large university teaching hospital, as my husband was. Whenever he was admitted, he was under the care of a hospitalist or other sub specialty – and usually receiving the most direct care from fellows/residents, which changed on every admission. His oncologist could visit and consult but was not directing his care while he was an inpatient. So, in his final months, he was not seeing the doctor he trusted to have that important conversation. He resisted the idea of hospice until he could ask her face-to-face in an office visit requiring transport by ambulance from a rehab facility — about 48 hours before he died peacefully at home, as he wished, with essentially 6 hours of excellent hospice care. Our daughter knows that I do not want to follow his path of trying every last procedure to extend life. And now I know how important it is for family members to also be willing to have the hard conversation with their loved ones.
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BK Books replied:
Hi Laura, you make a good point in describing the hospitalist’s role in care and how the primary care physician seems to get pushed out of the picture and care. This is a relatively new phenomenon and I don’t like it. It seems to lose all continuity of care. Blessings! Barbara
This article, and the comments, are so lovely and loving.
Another complication in the scenario is being a patient of a large university teaching hospital, as my husband was. Whenever he was admitted, he was under the care of a hospitalist or other sub specialty – and usually receiving the most direct care from fellows/residents, which changed on every admission. His oncologist could visit and consult but was not directing his care while he was an inpatient. So, in his final months, he was not seeing the doctor he trusted to have that important conversation. He resisted the idea of hospice until he could ask her face-to-face in an office visit requiring transport by ambulance from a rehab facility — about 48 hours before he died peacefully at home, as he wished, with essentially 6 hours of excellent hospice care. Our daughter knows that I do not want to follow his path of trying every last procedure to extend life. And now I know how important it is for family members to also be willing to have the hard conversation with their loved ones.
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BK Books replied:
Hi Laura, you make a good point in describing the hospitalist’s role in care and how the primary care physician seems to get pushed out of the picture and care. This is a relatively new phenomenon and I don’t like it. It seems to lose all continuity of care. Blessings! Barbara
Sarah
Hospice was a wonderful experience not only for my dad but for my entire family. As a nurse and hospice volunteer, I knew the benefits of hospice and got my dad started 10 months before his final day. He had started to need more help taking a shower so we were assigned an amazing male CNA to come 3 days a week to assist with a shower. My parents enjoyed visits from a chaplin, music therapist, massage therapist and also a wonderful hospice volunteer who still keeps in touch with my mom now 2 years after dads passing. The primary nurse who oversaw his care was a great comfort and made sure she got to know our entire family to give us support and advise. My dad had a beautiful very peaceful passing and I truly credit the hospice team who provided excellent care to not just the patient but to his loving family.
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BK Books replied:
Thank you Sarah for sharing your hospice experience. Your sharing may help others reach out to hospice sooner. Blessings to you and your family. Barbara
Hospice was a wonderful experience not only for my dad but for my entire family. As a nurse and hospice volunteer, I knew the benefits of hospice and got my dad started 10 months before his final day. He had started to need more help taking a shower so we were assigned an amazing male CNA to come 3 days a week to assist with a shower. My parents enjoyed visits from a chaplin, music therapist, massage therapist and also a wonderful hospice volunteer who still keeps in touch with my mom now 2 years after dads passing. The primary nurse who oversaw his care was a great comfort and made sure she got to know our entire family to give us support and advise. My dad had a beautiful very peaceful passing and I truly credit the hospice team who provided excellent care to not just the patient but to his loving family.
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BK Books replied:
Thank you Sarah for sharing your hospice experience. Your sharing may help others reach out to hospice sooner. Blessings to you and your family. Barbara
Lori Martin
Thank you Barbara for words so many need to hear. It saddens me when I hear of families putting off hospice til the very last days of their loved ones life. Hospice offers so much more than morphine as comfort care. It’s the comfort for the soul that’s almost equally important.
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BK Books replied:
Lori, I like how you described Hospice care as “comfort for the soul”. Blessings to you. Barbara
Thank you Barbara for words so many need to hear. It saddens me when I hear of families putting off hospice til the very last days of their loved ones life. Hospice offers so much more than morphine as comfort care. It’s the comfort for the soul that’s almost equally important.
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BK Books replied:
Lori, I like how you described Hospice care as “comfort for the soul”. Blessings to you. Barbara
Anne
Thank you for this article. Most doctors do not want to offer comfort care because they are not willing to tell their patients that nothing else will work!
My husband would have been much better if only his doctor told us early on that there was nothing more I can do. He was only in Hospice for about two weeks before his death! He died in 2012 and the help I received from a Hospice grief counselor was so beneficial to me.
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BK Books replied:
Hi Anne, I’m so glad you were able to work with the Hospice Bereavement counselor. They can offer such good support. Blessings! Barbara
Thank you for this article. Most doctors do not want to offer comfort care because they are not willing to tell their patients that nothing else will work!
My husband would have been much better if only his doctor told us early on that there was nothing more I can do. He was only in Hospice for about two weeks before his death! He died in 2012 and the help I received from a Hospice grief counselor was so beneficial to me.
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BK Books replied:
Hi Anne, I’m so glad you were able to work with the Hospice Bereavement counselor. They can offer such good support. Blessings! Barbara
Dolly
thank you, a great read and reminder. Hopefully, each of us in our own way are getting the “words” out. blessings!
thank you, a great read and reminder. Hopefully, each of us in our own way are getting the “words” out. blessings!