« A Dog's Life | Main | Nurse Blog Carnival #8 »
October 05, 2006
Is This Really Hospice Care?
Beka - I’m flying back to Upstate New York this evening, where the leaves have turned a golden hue already. My best friend’s sister is dying from metastatic cancer. The last few weeks have been an uphill battle in obtaining a hospital bed, basic nursing aide service, supplies (such as gloves and oxygen equipment), and emotional assistance for the caregivers. My best friend, also a nurse, has been providing most of the physical care to her sister for the last 4 weeks.
The hospice nurse comes in each day for 10 minutes, checks vitals signs, records them, and then leaves, nicely dressed each day. A new nurse arrives each day – there’s no consistency in the plan of care. Pain management has not even been addressed in an optimal sense yet. Yesterday the hospice nurse said “We don’t provide any physical care to patients, nor do we assist families in doing so.” It seems that the family isn’t even being offered respite care while still waiting for aide service.
What is being offered then? Pronouncing of death at the appropriate time? Is this really hospice care today? It was always my thought that hospice nurses perform many traditional nursing duties such as observing, assessing, and recording symptoms. But aren’t they also supposed to spend a few hours with patients and families assisting with physical care and providing much needed emotional support?
Don’t the specific services offered by hospice include home health aides, pastoral caregivers, social work services, therapies (physical, occupational, speech), dietary counseling, drugs and medical supplies/equipment related to the life-limiting illness, back-up hospital care, respite care, trained volunteers, and bereavement counselors? None of this is happening for my friend and her sister.
And what about pain management? It seems to have been forgotten in the meantime. This weekend I will change my role and offer hospice nursing and try to understand how it is defined or what it should be.
Hospice nurses – tell me: Is this what hospice care is (or isn’t) today?
October 5, 2006 in Beka | Permalink
Comments
Ever notice how for profit Hospice care rely on Volunteers ? They ask you to go here and there and to do this and that and never think that you might need " gas money "
As a a currant Hospice Volunteer, I am appaled at the profit that these people are making. First the family, Patient have to pay, then the volunters pay their own way.
I am in the wrong business.
Ken
Posted by: Kenneth M. Reed | Mar 27, 2008 9:30:41 PM
Is this standard Hospice care? I friend was dying from colon cancer that had spread to the liver. She was being cared for by another friend in home and had Hospice. A Hospice doctor had been to the home a two days before she died and clearly saw that one leg was starting to swell. The doctor advised the patient to stop asprin therapy and said that she would die quickly and painlessly by a clot going to he lungs. NO pain medication was ordered. By the next day the patient was in horrible pain with a badly swollen leg and the Hospice nurse called an ambulance to take the patient to the ER for pain relief and confirmation of the clot. On route she was screaming, the doctor didn't say it would happen like this! At the ER she was given dulaudid and other medications via IV releiving the pain and it was found that there was a large clot in the femeral artery. The doctor recommended surgery but could not find a surgeon willing to operate. It was the doctors feeling that surgery would be preferable to a horribly painful death and the patient had agreed to the surgery.
When nothing could be done the patient was transfered to a nursing facility at 2AM. Instead of giving another shot of pain medication (it had been 6 hours) the IV was pulled and pain pills given. To make a long story short, the nursing facility could not give IV's and the patient died 12 hours later sreaming in pain. The Hospice nurse had finally arrived a short time before her death after finding out where the patient had been transfered some 12 hours earlier.
Posted by: Susan | Nov 5, 2007 12:37:04 PM
I've been thinking about my late dad's hospice care. My sisters and I are RNs. The doctor angrily said to never bring my dad to the hospital again. We nurses could handle most of the issues involved in hisdying. The problem was the agency- one of the biggest in the state. They sent out their best nurse and clergyman to do the admission work. They were impressive people. After that the nightmares started. Here is a documentation of all the hospice care we got in a two week period. The nurse came once to do a bath and proceeded to sit for two hours while the family did the bath. She provided no care or information. She said she had no knowledge of how to bathe a patient. The agency never returned our phone calls or come out as promise on the day he died. The nurse came immediately out when he died at 2230 hours and loudly gave report. I sat and listen to someone treat us as non-persons. She could have been a robot. Didn't even say sorry that he died. The clergy person should have been named a comedian. He spent two hour telling jokes about his miserable family at the moment of my dad's death. I would have loved to tell them to leave because they were hurting rather than helping but it is a small community in another state and my mom didn't want to get anyone upset. For her sake I said nothing. The only people who comfort us were the mortuary. They gently covered and transported my dad. The mortuary comforted us at the viewing etc. of the body. My mom refused to filled out their questionnaire about the quality of care we received. If I need to fly home for my elderly mom I would refuse it. Seeing your parent dying is enough trauma. The state I come from people say they couldn't have made it without it. I kept telling my other RN sisters that we were lucky to be nurses and wondered how the agency's other clients dealt with it. If care is good it helps the situation. I am glad to find this site on the web where care has varied. I like the honesty. It helps me heal when I share my story. Thanks.
Posted by: nrubua | Sep 3, 2007 3:54:54 PM
I agree with many comments here. I do not think that your experience is the norm and you are correct in that this treatment was absurd. Good hospice care involves the aggressive treatment of physical and emotional pain and symptoms. It focuses on enhancing a patient’s comfort and improving quality of life. It does not sound like your friend's sister and other involved recieved any of this. Very disappointing indeed!
Posted by: Hospice Care | Feb 7, 2007 2:45:00 PM
I have been in hopsice 13 years and have been a part of many roles. When I was a field case manager my goal was always patient/family first. As with all aspects of nursing there will always be incompetent healthcare professionals. I have been in many hospitals through my years and have seen the same type of incompetence and and often non caring nurses, MD'S, NP's and aides. It saddens me that your experience was poor because there are many good hospice's out there. Please don't let this experience label hopsice as bad and noncaring. Thank You Karen
Posted by: Karen Witthuhn | Jan 13, 2007 8:18:12 PM
I, too, had a less-than-favorable experience with hospice. I am an RN and my mother was in my home for 5 yrs, 3 of which she was mostly bed-bound and 1 1/2 yrs, totally bed-bound. I was her primary caregiver 24/7 tho' my dad helped somewhat. When her cancer metastasized and she got on hopsice, the nurse came weekly and, we were told, would come oftener as the end approached. That never happened. When mom became comatose, the nurse would call me in the morning for a "report". My sister and daughter, who had arrived to be with us for the last days, both wanted to rake hospice over the coals but I was so weary emotionally and mentally that I couldn't handle them doing that. Once a social worker and once a chaplain came out but the talked with my dad, not me. Anyway, I was not charmed with the care but I agree with most of the postings that say it's probably like nursing anyway, it depends on the nurse. It also depends on the aide--the aide assigned my mom once told her, while I was assisting her to bath mom (I thot caregivers should get a rest?!) that she (the aide) once had a cancer patient whose pain got so bad he chewed his patch to get relief!!!!!
Posted by: donna edinger | Nov 2, 2006 9:17:49 AM
I am very sorry that you had such a horrible experience with hospice. I have been a hospice nurse for 2 years with a for-profit hospice. I do not think that the issue is with non profit vs profit. I think the issue is with the hospice provider themselves.THere is no such thing as nonprofit- they are billing and making money just as the profit hospices are. I know that any care reported to us like the care you received would not be tolerated. Families have a choice and that is most important. It is your right to discontinue services if they were not provided to your standards. I certainly would report this to the director. The hospice company that I work for is one of the most compassionate and caring employers I have ever had. I wish that I had an opportunity to take care your loved one... Remember not every nurse is cut out to be a hospice nurse. It is not easy.
Posted by: Erin | Nov 1, 2006 2:48:27 PM
I have been in nursing for 30 yrs,mostly running a large city ER and I have to say my dealing with hospice was remarkable. My Mother was experiencing her fourth cancer in ten years and this liver cancer was to be the end of her suffering.She was diagnosed with a time line of three months yet after the holistic interventions I procured she was cognizant and active for 3 1/2 years. When the time for hospice arrived her doctor refused to allow placemet in the program. I took her to the hospice director physician and was allowed entry in the program. For 4 months my Mother was allowed to be in control of her pain and her life. I can never say enough about the hospice in my area of Massachusetts, these nurses were always available when needed and provided the comfort my Mother needed from an outside source.They allowed me to step back and be just the daughter instead of trying to be the nurse, social worker, and more times than not the physician as I had to do in the previous three years. Any one that works hospice is a special breed of nurse,I would never want to be in their shoes,consoling grief stricken family dealing with the confusion, anger and denial of death on a daily basis. My heart and mind commend you all on a job well done. Please know that you do make a difference.
Posted by: Emeraldcuteyes | Oct 28, 2006 3:10:14 PM
I had hoped things had improved by now. My experience with hospice care in 1995 with an 18yo daughter dying of ovarian cancer - was much the same as you described and in some aspects worse. After 3 weeks we went back to home care and relied on our own resources. Our physician had contracted with their social services several months before we enrolled in hospice care - she was great. However when we terminated hospice after we enrolled with them, they told us the social worker was no longer allowed to be involved. I guess it was punishment?? Thanks for posting your experience. Jane
Posted by: Jane Madsen | Oct 25, 2006 1:59:16 AM
I worked as a Hospice on-call nurse for 1 1/2 yrs. Hospice nursing is so different from any nursing field, yet you draw on all your knowledge to address various problems/issues with the patients. The Hospice for which I worked got referrals from the physicians, sent an "in-take" nurse to the pt's location and once the decision was made to enroll the pt. in the hospice program, the pt. was assigned a case manager (RN). This nurse went to visit the pt. as often as he/she needed to go based on the pt's needs. He/she also set up whatever services the pt needed (medical equipment, social services, clergy services, etc). On each visit the case manager recorded a physical assessment as well as an emotional assessment of the patient. If the pt's family or caregiver asked for a nurse visit during regular business hours, it was their case manager who went. If it was after hours, it was the on-call nurse. At the time of death, again if during regular business hours, the case manager attended. If after hours or week-end, the on-call nurse attended. The hospice program also provides follow-up care for the family for up to one year after the pt's death. Grief counseling is provided at no cost for the family. This type nursing was one of the most rewarding times in my entire career. It was only because I have a full-time day job and couldn't continue the physical stress of the hospice on-call job that I resigned. My advice to this family would be to talk with a supervisor or director of the hospice program. If this particular hospice philosophy or services do not agree with the patient and family needs, I would recommend that the family seek out another hospice.
Posted by: Belinda | Oct 18, 2006 11:15:58 AM
I worked for a nursing home that is a partner with a hospice agency for three years. Now I work in a hospital where the same hospice has privileges. I haven't seen anything better than this hospice, and I recommend hospice care to patients and families with the need for it. I have had only positive experiences with the hospice nurses and doctors. They provide everything from meds to prayers, whether the patient is at home, in a nursing home, or in the hospital for respite or end of life care. They even offer couseling for nursing home and hospital nurses that care for their patients. The agencies that can't spend time with patients and families shouldn't be allowed to offer (or charge for) hospice care.
Posted by: Jessy | Oct 16, 2006 5:43:42 AM
Disagreement with Joyce's Remarks -
I am a Nurse too.
Yes, I flew up to help my best friend who graduated with me from nursing school 19 years ago. She and I have been inseparable even though currently we live about 547 miles apart from one another. She was physically , emotionally and socially exhausted from providing care to her sister for the past 15 months.
I did what any best friend would do- let her be the sister , and assist with the caregiving -organizing aspects.
Is it acceptable for a patient to wait 5 hours to be placed on a Morphine pump ?
Are vital signs not part of Nursing 101 - basic assessment ??
Do you not grieve with a family at the same time...?
Should be you be hearing comments from the Hospice RN such as the ones written and heard in my most recent blog ? She actually was afraid to touch the patient.
My best friend was definitely not in denial,she knew from the start what was going on, just as I did when my own father died at home from cancer in 1993. She does, however, regret utilizing Hospice care at this point..Nor did she feel my arrival was inadequate...It's what best friends do in times of trouble...be there..
This was a for-profit Hospice. I'm glad that you and your family had such a good empathetic Hospice Nurse at the right time.
But for us - it all occured at the wrong time. May be the wrong state, may be the wrong nurse ?? Is this realisticaly acceptable ?? May be we should be redefining what is true Hospice nursing ??
beka
Posted by: beka | Oct 14, 2006 5:24:11 PM
I must say I was not suprised to read about this senario. I have been a hospice nurse since 1986 and seen the specialty emerge. I have heard the bereved grieve for many reasons, end of life care should not be a bereavement issue. Clients and families have a right to choice and standards of exellence at this most important time in their life.
We are still growing and defining standards of nursing practice/care in this area.
Within any other area of nursing there is clarity of expectations in care delivery and patient outcomes. If I were to appear at any ER in the nation I would receive "generally" the same care. One can even view certain interventions as critical paths! We still have work to do, and must train nurses, educate the public and view end of life care within the continum of care intelectually and financially.
One of the greatest constraints to developing this area is the variation in reimbursement ratios. Futile care and continuing treatment often is the only option available to caring families. Until we in health care embrace death and develop a language of care that reflects this, hospice will be relegated to the shadows and remain waiting in the wings as the greater cash cow grazes.
Posted by: Terry Schumaker | Oct 13, 2006 11:23:50 AM
I am surprised to see the responses above. I left hospice home care because the case loads became so large that I could not provide the kind of care that you described as a minimum expectation. Hospice has become the new cash cow for some organizations, and the executives only see numbers, not patients or their families. The only patients who got what I would consider to be quality care were those who were personal friends of the executives, or those whose families "caused problems". Unfortunately, the dying get no better care from the hospice than they got from the hospitals that initially ignored them.
Posted by: J | Oct 11, 2006 6:30:17 PM
Hospice has become a huge money maker with less emphasis on caring. I have seen pts who were on Hospice for 5 years being certified "terminal" every 6 months like clock work. The longer market forces drive healthcare the greater the chance the patients recieve the short end of the stick.
Posted by: | Oct 11, 2006 10:10:35 AM
This is not my experience with Hospice. I am a nurse. Four years ago my husband was dying with liver cancer and we were assisted by Hospice. The hospice nurse was wonderful. I think the writer is placing too much emphasis on such things as vital signs, etc. and ignoring what the nurse who is providing care to a family member may need. The Hospice nurse realized immediately that I was in denial and provided emotional support to grown children in the family who feared their father was in pain. I feel the writer who flew in from some place, who knows where, was very inappropriate in this circumstance and maybe even caused the sister to feel inadequate in her care of the patient.
Posted by: joyce wilcox | Oct 10, 2006 11:26:16 PM
I was deeply sicked/saddened by your hospice experience. I do continuous care nursing for a for profit hospice. We provide 24 hour nursing (LVN or RN) for the patient/family when either the patient's condition is critical, or to help the family deal with all that's going on. It is tremendously rewarding work, hard emotionally at times, but always worth it. I've shed many tears with families over their loved one's passing. The comments I've read seem to support my feelings that your hospice experience was far from normal (I hope.) I feel we have one chance to "get it right," I do all I can to do that. I know many times nurses and other staff visit families on their own time, because they developed such a special bond during the time they were on our hospice program. This type of work is not for everyone, unfortunately, it seems your experience was with folks who belonged elsewhere. I hope your expeience is reported to whatever agencies accredit or monitor hospices in your area. This is not what hospice should be about.
Posted by: mary | Oct 10, 2006 9:38:29 PM
When families are going through such an ordeal as a loved one dying, the care they receive must be delivered with the needs of the patient and family in mind, not the cost concerns. The professionals that provide good hospice care are there for the family and patient for whatever time is required in order to care for them both. Most agencies realize that their nursing staff may spend an inordinate amount of time with one patient because of the situation they are in. In a team approach, other professionals on the team will assist in covering other patients so that the primary nurse can spend adequate time to meet the needs of the family and patient. As a manager for a large corporate for profit agency, I stress to the staff (I do the orientation) that the amount of time spent with a family and patient is dependent upon the needs of the family and patient, not the needs of the company. I agree with others that your state regulatory department and medicare be notified. And I would like to apologize to you on behalf of all of use who consiedr ourselves hospice professionals.
Posted by: Dave | Oct 10, 2006 6:04:36 PM
Thanks to All for your explanations, wisdom and support.
There is no doubt that Hospice Nursing can be truly rewarding- although the weekend ( see most recent post ) was incredibly long. But providing comfort and care requires much love, dedication and compassion.
I applaud all those of you who advocate for families and patients as the dying process and grief reactions ensue.
APPLAUSE, APPLAUSE !!!
beka
Posted by: beka | Oct 10, 2006 6:01:39 PM
I am the director of two centers of a for-profit hospice.
I would fire any nurse or aide that behaved the way you describe. My nurses and aides don't become attached to patients, but they form a rapport quickly, and they maintain it by being genuine, warm, empathic and caring.
Two things are paramount (and other issues form a close second) with our care of hospice patients. One, pain management and comfort. Two, empowerment of the patient and their caregivers.
The process of dying is as much an important passage as is the process of being born. We talk with our patients, and their families, and their friends, and whomever they wish to have with them. We support and guide everyone. Our goal, at the end, is a good death. We keep up the support for 13 months after the patient passes.
If we have a patient long enough (sadly, we often get the ones who are already imminent, that no one else wants), that family will get to know all of us. We're not that big, but we want the families and patients to know us so that when someone comes in the middle of the night, or at the end, it won't be some stranger. It will be someone they've already cried with, or laughed with, or hugged with.
I'm sorry that your friend's sister got with the wrong hospice. My heart breaks for all of you, since a decent hospice provides care and support for the patient and everyone concerned with the patient who wishes it.
I wish their hospice could have been us!
Posted by: Christine | Oct 10, 2006 6:00:48 PM
I too am so sorry for all the added stress your friend and her family as well as you have as a result of this terrible situation. I would like to comment on one reply that stated that a job in nursing allowing a nurse to spend several hours in the home must have light schedules and lots of nurses. Not so. "Hospice Care" is all emcompassing. By that I mean that the family receives (or can decline as they feel necessary) a multi disciplined team to care for the pts and family. That means that a HHA visits for several (1.5-2hrs 3-5 days a wk)hrs a week, the nurse (usually a primary nurse and then a partner or back-up part-timer visits 1-3 times per week. included as well is the social worker the chaplain and volunteers and in some instances either the pt's own MD or the hospice medical director also visits if the pt has symptoms that are hard to control. Also some hospices (increasingly more these days) have in-pt units that can allow the pt's family a respite of several days when the care becomes overwhelming or longer if the pt has symptoms that cannot be managed at home. I agree healthcare these days has become a business and it is important as with any "consumer purchase" that we are aware of our rights. The highest of those is our right to good care and to be able to choose that care. I have been blessed to work in the hospice field for the last 13 years and I too believe it is my calling. I can think of nothing else I would now want to do. I can also say that with great pride the people I have been blessed to work with have been the most caring and giving that I ahve met in my nursing career (25 years). They personally stay with pts and families either in the home or on the inpatient units until the family is comfortable and the pt at peace. Not all deaths can be as peaceful as we would like them but if your calling is hospice care then it is our mandate to pull out all the stops to try.
Please advocate to your friend and have her advocate for her sister. Contact her physician and request a change of hospice. Contact hospices (yes more than 1 if necessary) to find out the services that will most suit her sister and then actively petition to have her care transferred there. Hopefully it will be a quick turn around and you will all find some measure of peace in this difficult time.
G-d speed.
Posted by: mf | Oct 9, 2006 2:28:52 PM
I too am sorry that you have experienced the absolute worst side of hospice.
I can assure you that not all hospices are the same but they are held to the same standards. If this hopsice recieves federal money (medicare/medicaid) they are severely out of compliance. When you notify the state omsbudsman be sure to notify and log a complaint with medicare also. Investigations happen every day accross the nation due to these type of allegations.
If you are in search of a reputable hospice you can check with the NHPCO - National Hospice and Palliative Care Organization. The top hospices accross the country belong to this organization and they may be able to assist you. At the same time you need to speak to the physician and ask him to call and place orders with the new hospice as they are unable to transfer care without you- the client - making the call. It is a violation for the new hospice to contact the physician and request the care be transferred.
I hope this helps a little. God Bless!
Posted by: Denise | Oct 8, 2006 6:47:24 PM
Stating that this is a profit vs non-profit comparison is total crap. I have worked for both--the non-profit the donations went to pay administrative costs and executive salaries. Why don't we focus on leadership of the hospice where the values and mission (regardless of status) are communicated.
Posted by: Nnancy | Oct 8, 2006 3:56:36 PM
Unfortunately for some companies Hospice is becoming a "business" rather than a patient/family service. In the past when a patient/family was ready to change the course of care to comfort focused care, they would call a Hospice Program and would receive Hospice Care Services. There is an enomormous growth in the Hospice industry and with companies competing with each other, they are focusing greater efforts on marketing services to physicians than to providing care and service for patients. Bottom line, when Hospice is needed the patient and the family need to "shop" around. They need to ask what types of services are offered, what is covered by the hospice and what they can expect in the way of support. They should ask specific questions, at least as specific as they are able and then they should choose the service that best fits their individual needs. One can not take for granted that they will receive the same type of services from all providers. The good side to this is, there are new companies opening every day so the choices are not limited. And I just add - when we see something happening that is not right, whether it be Hospice, Homecare, or some other type of service - we need to open our mouths and speak up. Concerns and complaints can be reported to State Health Departments. Poor care practices do not have to continue unnoticed by anyone other than a suffering patient and family!
Posted by: Toni Alvarado | Oct 6, 2006 4:02:45 PM
It is very upsetting when anyone experiences that kind of treatment when a loved one is dying. I have ben a hospice nurse for 13 years and truly believe that this is my calling. As I visit each patient I try to spend as much time as the patient and caregiver need not just for physical care, but for emotional and spiritual care as well. Sometimes the hospice wokers are the only people that family will see for the entire day. When we don't have an aide available it becomes part of my job to provide that personal care. I seem to remember being instructed in nursing school in bathing a patient and changing the bed. I know that it was 20 years ago,but I hope things haven't changed that much and if they have maybe it's time to go back to the basics. My advice for your friend is to start calling other hospices in her area and ask questions about their services and then change hospices. It is afterall the patient's right to choose!! Hang in there and thanks for being a great source of support and inspiration to your friend and the rest of us. God Bless You!!!
Posted by: Michele | Oct 6, 2006 3:11:34 PM
