By E. Roberts Musser
The Davis Senior Citizens Commission convened a forum on hospice issues. There was a selected panel composed of an internest/geriatrician from Vitas Innovative Hospice Care, a social worker from the UC Davis Medical Center, and a representative from Sutter Hospice. Three Commissioners shared their own hospice experiences, and an attorney-commissioner described two of her clients who had less than optimal hospice encounters.
For the uninitiated, hospice care is of two types:
“Hospice focuses on caring, not curing and, in most cases, care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.” See here
- “Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness-whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.” See http://www.getpalliativecare.org/whatis
To be more precise, hospice care is provided only to those certified by a doctor to have a terminal illness with 6 months or less to live. Palliative care, on the other hand, is suitable for anyone with a serious illness in need of symptom relief. Both hospice and palliative care attempt to give the patient a better quality of life than they would ordinarily have without the benefit of such services.
Barbara Torrez from Sutter Hospice indicated such services provided patient empowerment, dignity, pain control, and independence. Dr. Amacher from Vitas Innovative Hospice Care described hospice as a Medicare benefit. She encouraged patients to seek out hospice services as early as possible. She noted hospice is the “frosting on the cake”, giving extra TLC at a difficult time. She noted that hospice offers chaplains to provide spiritual confort, nurses to give medical intervention, nurses aids to assist with activities of daily living, and volunteers just to impart friendship and company. Susan Wilson, a social worker from the UC Davis Medical Center opted for hospice as a career choice because she preferred to be given the opportunity to interact with patients. She stressed legacy building through letter writing, so that patient memories would not be lost. The UC Davis Medical Center hospice serves many indigent patients. Counseling is provided to families, where the focus is on quality of life.
One commissioner described his experience with hospice just before he lost his wife to cancer. He was quite impressed with the training he received from hospice in caring for his deathly ill spouse. Fortunately his wife did not become disabled until one month prior to her death. Hospice provided a constant family environment, which made the final days easier to bear. Another commissioner depicted her encounters with hospice as equally positive in the care of her husband, who had Alzheimer’s Disease. She noted hospice care is very complex, and is an enormous undertaking for the caregiver. It did make end of life care much better than it would have been without it. Her husband accessed hospice care twice, recovering somewhat after the first and second times. The bereavement services were excellent. However, there was one particular male nurse that in her opinion was negligent, because he did not visit her husband as often as required. There was also a problem with a palliative care doctor who refused to certify her husband as terminally ill towards the end, even though her spouse died less than a week later.
An attorney-commissioner noted two cases that had been brought to her attention, both bad experiences. Each situation had certain aspects in common as follows:
- The attending physician was cut out of the decision-making loop;
- The caregiver spouse was bypassed for medical decisions;
- Patients were threatened with discharge from hospice if all orders were not followed;
- There was pestering by hospice about unwanted bereavement services;
- There may have been a hastening of death by overmedication.
All the panel members seemed surprised at such unfortunate experiences. To a man, they insisted it should have never happened if hospice care had been administered as intended. They addressed most of the above identified issues. According to the panel, the attending physician should always be part of the decision-making process. However, it is not uncommon for general practitioners in particular to be reluctant to deal with end-of-life issues they are unfamiliar with. In addition, the patient’s wishes must be honored, even if it runs counter to that of the caregiver. Further, it is frequently the case that a family member is unwilling to accept the impending death of a loved one, and so it is unexceptional to want all medical measures to be taken, e.g. a feeding tube inserted, even if it is against the patient’s wishes.
The third point was not addressed – threats of discharge from hospice if orders are not followed to the letter. As for bereavement services, according to one hospice representative, sometimes family members take up to a year or more to accept death or anything remotely resembling grief counseling. So to offer such services with some frequency may be necessary. While it is true overmedication may hasten death, there is a delicate balancing act between providing necessary pain relief for a better quality of life and slightly accelerating certain death. One important thing that was noted is that any particular hospice is only evaluated by the state no more than once every ten years. There may be some legislation on the way that will shorten that time frame to at least one time for each three year interval.
Lesson to be learned: Clearly the hospice industry is not well regulated. And like any other health care institution, it is far from perfect. However, if operated properly, it can offer invaluable services to assist with end-of-life care. It is imperative to check out any hospice ahead of time if possible; strongly advocate on behalf of the patient undergoing hospice care; and speak up if you have determined something is not right. If for some reason you or your loved one has a bad hospice experience, do not be afraid to file a complaint with the appropriate state agency. To report such unacceptable incidents is imperative, so that data can be collected and referenced for necessary improvements to the hospice industry.
Elaine Roberts Musser is an attorney who concentrates her efforts on elder law and aging issues, especially in regard to consumer affairs. If you have a comment or particular question or topic you would like to see addressed in this column, please make your observations at the end of this article in the comment section.
I was too chicken to go to this forum because current hospice problems my family members on the east coast are facing would have made it too hard for me to keep my composure.
The hospice “help” they had briefly let the meds run low and would not do blood draws. This led to my relative’s great discomfort from what turned out to be very low potassium, which was quickly remedied after a trip to the hospital. Surely doing a blood draw to monitor potassium so that it can be kept at a level that keeps the patient comfortable should fall under hospice care. It would not cure the cancer that is killing her, but it would keep her more comfortable. That hospice service was fired. (The family has TriCare, which even paid for trial therapies at Dana Farber in Boston, so the insurance company is not a likely culprit in this instance.)
Another east coast relative who does office work in an oncologist’s office now has that office looking into what hospice really does and does not do, out of concern that they may have unknowingly referred people to hospice thinking they would get more help than they really would get.
Nearer to home, a neighbor of mine who had blood loss with an undiagnosed cause was relegated to getting only one unit transfused per session after she started hospice, even though it was well known that it took three units for her to feel better. So she suffered needlessly in her last weeks. I don’t know what hospice program she was on, but it did not serve her well.
Here is an eye-opening piece on non-profit hospice versus for profit hospice: http://www.davisenterprise.com/local-news/news-columns/yolo-hospice-do-you-truly-know-hospice/
Last, palliative care has its own issues. I can’t find the piece I read recently about the problems that accreditation in this area is designed to solve, but the gist was that it is a new field that is not working smoothly yet. But here is a piece about the FIRST advanced certifications for palliative care.
http://www.jointcommission.org/the_joint_commission_awards_first_advanced_certifications_for_palliative_care/
That these are the first is an indicator that there is still much work to be done in this area. The good news is that the work has begun.
Elaine: Thank you for a good piece on a painful topic that we really do need to contemplate sooner rather than later.
To Barbara King: Thank you for sharing, and my deepest sympathies for your loss. I know it could not have been easy to tell your story, but it was important nonetheless. It glaringly illustrates that the consumer must be ever vigilant. Did you ever file a complaint against the hospice that your family on the East Coast was dissatisfied with? Why or why not?
You are absolutely correct that this is a very difficult subject to tackle. Our Commission’s hope is to enlighten consumers…
Elaine: She is still on the planet, at home, with daily visits from her five month old first grandchild. The family is living minute to minute, so filing complaints at this time is unlikely.
To Barbara King: I am so glad she has the time to visit with her grandchildren. My heart goes out to you and your family through this most difficult time. My hope is that at some point a complaint is filed against the hospice. But it will not surprise me if your family chooses not to. I found this to be a real issue – complete reluctance to file any complaint.
I did attend the hospice forum and with no disrespect intended to Ms. King, it WAS very difficult to remain composed.
My wife died after 38 days of our hospice provider’s version of “holistic comfort care.” This the hospice says is “whole person” care…mind, body and spirit delivered in a loving way by professionals answering a calling (not a job) in order to preserve dignity and quality of life for however long (or short) that life may be.
My wife was quadriplegic with metastasized breast cancer. Both her lungs were full of tumors inside and out, her spine was cracked open in two places, compressing her spinal cord at each spot. Cancer had severed both her leg bones from her hips. She’d endured radiation, chemotherapy and 7 surgeries including a complete hysterectomy for endometriosis that was misdiagnosed as ovarian cancer. She would say, “I look like I’ve been mauled by a bear.”
I’d like to share some of her hospice experiences.
[b]Hospice provides Durable Medical Equipment – we got:[/b]
– an initial mattress so full of holes that towels had to be used for stuffing
– a replacement for the hole-y mattress with one covered in a large brown stain and reeking of urine
– a week long delay (cost/authorization issues they said) to receive the correct Low Air Loss mattress with bare wiring sticking out of the pump when it arrived
– hospital style furniture caked with dried food (?)and looking like it had been banged around in the back of a pickup truck
– some needed and requested equipment was never supplied
– no help from either the hospice team or hospice office staff to resolve any problems with DME provider
[b]
Hospice provides pharmaceuticals (drugs) tailored to the needs of the patient – we got:[/b]
– statement by hospice on day one that we (both) must get over any concerns/resistance to taking drugs because “she’s going to die anyway.”
– pressure by nurse to medicate (morphine) for the slightest twinge or when needed to “get the job done”
– urging by nurse to medicate (lorazepam) even knowing of previous near-fatal reaction, “Well, it’s still good for calming her down”
Hospice allows you to choose and keep your own physician as “attending physician” and considers such to be the most important person on the hospice team – we got:
– once our attending physician had signed the terminal certification and the initial Plan of Care, he was never contacted again
– Despite repeated requests for a copy of the Plan of Care, the contents were never communicated nor given to us
[b]Hospice protects Dignity, Autonomy, Quality of Life and ensures “Loving” Delivery of Service – we got:[/b]
– when my wife refused to do one thing (which she had every right state and federally protected to refuse) the “loving” hospice suspended all services to her (“We have been ordered not to lift a finger to help you in any way”)
– the hospice gave her the choice of rescinding hospice care, transferring to another hospice or signing a new contract which required that she give up her right to refuse anything the nurse wanted to do to her at any time
– the hospice required that both she and I (as caregiver) sign the contract or face immediate expulsion/removal of all equipment
– the hospice required that any refusal by either of us no matter how small would result in immediate expulsion/removal of all equipment
– all this was done while the hospice nurse sat next to her bed holding the equipment needed to provide her relief from the severe edema in her arm
Two days after the contract was presented, my wife acquiesced to the hospice’s demands that she comply with what we all knew would likely be fatal to her. By the next day she was rushed to the hospital where she lingered and died.
The hospice then tried to block the funeral home (that she’d chosen) from picking up her body.
And this is not a complete list of all that happened to her in hospice…
Here, though, is an exhaustive list of what those “regulating” hospice have been willing to do about it…
– (nothing)
I did attend the hospice forum and with no disrespect intended to Ms. King, it WAS very difficult to remain composed.
My wife died after 38 days of our hospice provider’s version of “holistic comfort care.” This the hospice says is “whole person” care…mind, body and spirit delivered in a loving way by professionals answering a calling (not a job) in order to preserve dignity and quality of life for however long (or short) that life may be.
My wife was quadriplegic with metastasized breast cancer. Both her lungs were full of tumors inside and out, her spine was cracked open in two places, compressing her spinal cord at each spot. Cancer had severed both her leg bones from her hips. She’d endured radiation, chemotherapy and 7 surgeries including a complete hysterectomy for endometriosis that was misdiagnosed as ovarian cancer. She would say, “I look like I’ve been mauled by a bear.”
I’d like to share some of her hospice experiences.
[b]Hospice provides Durable Medical Equipment – we got:[/b]
– an initial mattress so full of holes that towels had to be used for stuffing
– a replacement for the hole-y mattress with one covered in a large brown stain and reeking of urine
– a week long delay (cost/authorization issues they said) to receive the correct Low Air Loss mattress with bare wiring sticking out of the pump when it arrived
– hospital style furniture caked with dried food (?)and looking like it had been banged around in the back of a pickup truck
– some needed and requested equipment was never supplied
– no help from either the hospice team or hospice office staff to resolve any problems with DME provider
[b]
Hospice provides pharmaceuticals (drugs) tailored to the needs of the patient – we got:[/b]
– statement by hospice on day one that we (both) must get over any concerns/resistance to taking drugs because “she’s going to die anyway.”
– pressure by nurse to medicate (morphine) for the slightest twinge or when needed to “get the job done”
– urging by nurse to medicate (lorazepam) even knowing of previous near-fatal reaction, “Well, it’s still good for calming her down”
Hospice allows you to choose and keep your own physician as “attending physician” and considers such to be the most important person on the hospice team – we got:
– once our attending physician had signed the terminal certification and the initial Plan of Care, he was never contacted again
– Despite repeated requests for a copy of the Plan of Care, the contents were never communicated nor given to us
[b]Hospice protects Dignity, Autonomy, Quality of Life and ensures “Loving” Delivery of Service – we got:[/b]
– when my wife refused to do one thing (which she had every right state and federally protected to refuse) the “loving” hospice suspended all services to her (“We have been ordered not to lift a finger to help you in any way”)
– the hospice gave her the choice of rescinding hospice care, transferring to another hospice or signing a new contract which required that she give up her right to refuse anything the nurse wanted to do to her at any time
– the hospice required that both she and I (as caregiver) sign the contract or face immediate expulsion/removal of all equipment
– the hospice required that any refusal by either of us no matter how small would result in immediate expulsion/removal of all equipment
– all this was done while the hospice nurse sat next to her bed holding the equipment needed to provide her relief from the severe edema in her arm
Two days after the contract was presented, my wife acquiesced to the hospice’s demands that she comply with what we all knew would likely be fatal to her. By the next day she was rushed to the hospital where she lingered and died.
The hospice then tried to block the funeral home (that she’d chosen) from picking up her body.
And this is not a complete list of all that happened to her in hospice…
Here, though, is an exhaustive list of what those “regulating” hospice have been willing to do about it…
– (nothing)
To Barbara King: I, too, am saddened to hear of the problems your family is having with the hospice industry.
To Elaine, the Commission and the Hospice Panelists: I commend you all for putting this together and appreciate those hospice members who were willing to show up.
My wife asked me before she died to promise her to do everything in my power to make sure that what happened to her in hospice didn’t happen to anyone else. I will honor that promise and the love I have for my wife until my own dying breath arrives.
Hospice is an unregulated industry, especially in CA. There are no state laws applicable to hospice as the legislature passed a ruling that until such time as they figure out what to do with hospice, hospices will follow the 24 page CA Standards of Quality Hospice Care. Who wrote it?…CHAPCA, the CA Hospice and Palliative Care Association. If you file a complaint against a hospice in the State of CA, you will be told that they cannot enforce the Federal Conditions of Participation put out by Medicare and that actually does contain some patient protections. They claim they can only enforce CHAPCA’s 24 pager that contains no patient protections.
Education of the public is key to anyone getting good hospice care.
In Barbara King’s comment she referenced an article in the Davis Enterprise on For-Profit/Non-Profit hospice. The link was changed on her but I think the article she referred to was at:
http://www.davisenterprise.com/opinion/opinion-columns/hospice-care-not-profit/
This article is from a management perspective but after you read this one check out another one at:
http://www.hospiceblog.org/2005/02/for-profit-hospice-vs-non-profit.html
then decide for yourself.
The article that her original link does go to is interesting in the sense that it promotes educating the public on hospice. It refers to the lack of public knowledge at least three (3) times but yet by the end of the article the author gave you no useful information on hospice, how to pick one, advocate for a patient…nothing.
If you want to read an excellent series on How to Choose a Hospice, check out the 9 part series at:
http://www.hospiceblog.org/2008/05/how-to-choose-hospice-why-it-matters.html
This is the first part and you will see the other eight (8) parts to the right of the story and all starting with the the word “Why.” I didn’t always agree with everything the author was saying but I didn’t expect to either. I did learn a lot.
Lastly, the thing that the hospice industry does most is to try to minimize the damage that can be caused by negative stories such as my wife’s (now known in Wash. D.C. as “the most horrific story of abuse by a hospice against a patient in the history of hospice in this country”) and that which is happening to Barbara King’s family. They are quick to say that these are “isolated incidents” or “aberrant behavior and rare.”
The truth of the matter is that in an industry that has absolutely no chance of a “do-over,” no chance to make amends, even one instance is one too many! Those of us who have seen our loved ones victimized need to step out of the shadows and tell our story collectively. No longer will the hospice industry be able to say that what happened is rare or an isolated incident.
To anyone who’s had a negative experience in hospice and would like to see something done about it: Please email me at djsomeyareed@yahoo.com.
To Barbara King: I, too, am saddened to hear of the problems your family is having with the hospice industry.
To Elaine, the Commission and the Hospice Panelists: I commend you all for putting this together and appreciate those hospice members who were willing to show up.
My wife asked me before she died to promise her to do everything in my power to make sure that what happened to her in hospice didn’t happen to anyone else. I will honor that promise and the love I have for my wife until my own dying breath arrives.
Hospice is an unregulated industry, especially in CA. There are no state laws applicable to hospice as the legislature passed a ruling that until such time as they figure out what to do with hospice, hospices will follow the 24 page CA Standards of Quality Hospice Care. Who wrote it?…CHAPCA, the CA Hospice and Palliative Care Association. If you file a complaint against a hospice in the State of CA, you will be told that they cannot enforce the Federal Conditions of Participation put out by Medicare and that actually does contain some patient protections. They claim they can only enforce CHAPCA’s 24 pager that contains no patient protections.
Education of the public is key to anyone getting good hospice care.
In Barbara King’s comment she referenced an article in the Davis Enterprise on For-Profit/Non-Profit hospice. The link was changed on her but I think the article she referred to was at:
http://www.davisenterprise.com/opinion/opinion-columns/hospice-care-not-profit/
This article is from a management perspective but after you read this one check out another one at:
http://www.hospiceblog.org/2005/02/for-profit-hospice-vs-non-profit.html
then decide for yourself.
The article that her original link does go to is interesting in the sense that it promotes educating the public on hospice. It refers to the lack of public knowledge at least three (3) times but yet by the end of the article the author gave you no useful information on hospice, how to pick one, advocate for a patient…nothing.
If you want to read an excellent series on How to Choose a Hospice, check out the 9 part series at:
http://www.hospiceblog.org/2008/05/how-to-choose-hospice-why-it-matters.html
This is the first part and you will see the other eight (8) parts to the right of the story and all starting with the the word “Why.” I didn’t always agree with everything the author was saying but I didn’t expect to either. I did learn a lot.
Lastly, the thing that the hospice industry does most is to try to minimize the damage that can be caused by negative stories such as my wife’s (now known in Wash. D.C. as “the most horrific story of abuse by a hospice against a patient in the history of hospice in this country”) and that which is happening to Barbara King’s family. They are quick to say that these are “isolated incidents” or “aberrant behavior and rare.”
The truth of the matter is that in an industry that has absolutely no chance of a “do-over,” no chance to make amends, even one instance is one too many! Those of us who have seen our loved ones victimized need to step out of the shadows and tell our story collectively. No longer will the hospice industry be able to say that what happened is rare or an isolated incident.
To anyone who’s had a negative experience in hospice and would like to see something done about it: Please email me at djsomeyareed@yahoo.com.
Hi: I’m not really sure if this is the correct place to make my comment, but I’ve read all of the above distressing experiences. It’s infuriating to me to read these stories. I’ve been on Hospice since last July (not living up to my end of the contract!). I live in Bisbee AZ (still have retired professor friends at Davis), and I have learned over 20 years that medical care in rural America is a total crapshoot. I had an anal tumor in 2010, did chemo, radiation, spread to lymph nodes in lungs. chemo almost killed me so I fired the lot of them. Fortunately (I believe) for me, all my treatment was done at the VA hospital in Tucson. The VA (I just realized this morning) while going over the whole procedure in my mind were the ones who signed me up for Hospice here. We have a local VA clinic and my case manager there (we’ve had a great relationship for two years) is who I would call if need be. At this point I get anxious at times and depressed at times and I wanted my Hospice doctor to send me some xanax. It didn’t happen yesterday and I was breathing fire this morning, but it’s coming this afternoon. I just want to say if people have bad experiences with Hospice treatment, they should get in touch with Medicare/Medicaid, whoever is in charge (I mean these people are receiving 100% reimbursement!!) and raise total holy hell if that’s what it takes. I want to be like my Hospice’s patient my nurse and social worker told me about last week: the lady who is 100, has congestive heart failure and has been on Hospice now for 2 years. Social worker said “I guess she didn’t get the memo. . .” My Hospice company has a person who does nothing but try and find new patients. They need regulation and oversight with the aging of this population. And while the people who see me: nurse, soc. worker, home health young woman etc. are very good, all of them never know when some company muckymuck will come fromTucson and fire 3 or 4 people just like that. Anyhow, there are days when I think I would welcome a decline into dementia, but for the most part I’m glad I can keep an objective eye on the whole system. Don’t let them push you around!!