October 10, 2006
Weekend Hospice Care: Did We Ask for Too Much?
Beka - This has been the longest weekend imaginable. I flew up to see my friend and her sister on Friday (see previous post). I knew things weren’t looking good. I drove as fast as I could from the airport directly to the house. I’m not allowed to drive due to my dystonia symptoms –- but often do when warranted, and this one of those warranted times. The house was filled with family members keeping a 24-hour vigil. Immediately I hugged my friend, MJ, and then went to the patient, Kathy, and spoke to her. She recognized me, still having the ability to ask “How are you?” She was as thin as could be, her fine cheek bones drawn and sunken in, and her skin had turned a yellowish hue. And she was physically tired, not having had solid food of any sort for 6 days.
Right away we organized shifts, so everyone could get some sleep. No one had slept much for the last week. An aide from the hospice service came, not the same one as the previous day, who had done nothing but sit on the couch. This aide was young and vibrant, but did not know the fine details of giving a bed bath. She learned this from me and MJ that day. She learned proper positioning techniques, body alignment, log rolling, oral and skin care from us as well.
About 2 hours later the hospice nurse arrived. Initially she would not go near Kathy, saying that she “had not established a rapport with the patient.” Bear in mind that she had been coming to the same house and seeing the same patient for the past 2 weeks. It was obvious that pain control was really sub-optimally managed. Kathy could no longer swallow oral meds. The strength to do so was no longer there. A few days early I suggested to MJ that she ask for a Fentanyl patch, but by now its strength was wavering. When we shifted an arm, leg, or even gently touched Kathy, she would cry out in pain. Bone mets were involved at this point.
Since Kathy had an implanted, usable Mediport device, we suggested a morphine pump for her. The nurse balked at the idea, instead focusing on using Oxycodone and Valium sublingually for pain, even suggesting that we “crush them for her.” Since I knew the oncologist involved (he had taken care of my own father at times during his battle with lung cancer), I told the nurse that it would be necessary to call the physician about pain management if she could not determine the right pain track to use. Out came the cell phone and a quick call to the oncologist was made by the hospice nurse. An order was obtained for a morphine pump.
The hospice nurse hovered in the background, and began packing her unused items, which included a blood pressure device. I asked her if she was going to check Kathy’s vital signs? The response that I got was that she didn’t “want to bother Kathy.”
Is a check of vital signs not part of physical assessment?
Recognizing there was a RN and an NP in the room she finally took Kathy’s vitals before leaving, not necessarily informing anybody about her findings until I ran after her.
Are families not to be informed about vital signs during the dying process?
MJ went to get some much needed sleep after the morphine pump arrived 5 hours later with a phone call from the hospice nurse informing us of “how much trouble” it taken for her to get the pump.
Was it too much trouble? Were we asking for too much? Was it the right thing for the nurse to say considering where we were in the dying and grief process?
We all took turns through out the weekend sitting by Kathy’s bedside as she fell into a deeper sleep, less responsive with each passing hour. We wept, reminisced about the past, and grieved. Kathy was surrounded by love, her family and friends, and her favorite recordings, including the song by Celine Dion, “The Prayer,” which would play softly in the background at times. We dreaded the arrival of the hospice nurse the next day, not knowing what to expect.
Had we asked for too much?
Death is nothing to Fear. It is only another Dimension – Wayne Dyer
(Note: As always, names and initials have been changed to assure patient confidentiality.)
Very good articles and it’s very appreciates post.your hospice blogs issues is different from others. Thanks and best luck for the future.
Posted by: Hospice Ventura County | Apr 21, 2010 6:03:45 AM
So sorry you had such a bad experience and especially sorry for your friend the patient. I work in a LTC where a lot of times we have palliative patients. It is not the ideal environment due to number of patients to nurses but we do our best to be faithful to their important care choices. With the nursing shortages we often have no RN's except the ones downstairs in the active hospital to consult, here often the Team Leader is an LPN. I am an LPN who has taken extra courses in pain management and palliative care along with others on staff. We try to pass the experience and learning along to our fellow staff. After death we evaluate each case to see what we can learn from it and continue to apply. My number one belief is to communicate with the patient and family (who is also under my care from the palliative perspective) and find out what is important to their end of life experience. Then care must be molded to care for their issues. Regarding vitals I agree if they have value - do them - ie temperature but a person near to death with a low BP there is not much to be done. Respirations, O2 Sat, temp are manageable and worth doing and not painful. I have had some people ask me not to do vitals, and a person off diabetic meds and taking nothing by mouth why do we continue to do painful blood sugar testing??? I feel we really have to advocate for the patient and relieve their pain as most times it can be managed very well given the right meds and delivery system. Lucky the patient who has family and friends ...I often wonder about the patient with no family at the mercy of incompetant or uncaring caregivers. The nurse should have never made you feel you were asking too much when she complained about getting the pump. She obviously felt insecure and maybe didn't even know how to operate one. End of life care should cover physical, emotional, spiritual, social care, all aspects. After 2 weeks and no rapport? Well do some care it will build some rapport! Anyway sorry to hear about your poor experience with your friend.
Posted by: Susan | May 12, 2007 1:29:46 AM
I think my mom has a bladder infection now and all the nurse continues to say is give her morphine. She doesn't want morphine, just basic care like anybody would. How come I can't find any information online about what to do if hospice neglects a patient? I can really feel the bottom line here; what is the payment system? I heard they don't get reimbursed for additional medical care. Something is wrong with this system. Many of the employees are wonderful people but the corporate entity and the management is definately "For-Profit" or mismanaged.
Posted by: margaret | Mar 18, 2007 5:11:03 PM
I am also Hospice nurse, regarding about morphine pump,very tricky, i have 5 years experience on Hospice, only 20% patient use it, because of many many reasons, also depends on how long patient going to live, less than week, usually suggest morphine dropper instead, combination with many other dropper, about vital signs, depends family's wish, one time family member are mad of me because i took VITAL SIGN on obivous dying patient, they don't like it
Posted by: kelly kane | Mar 12, 2007 10:49:55 PM
Thank you so much for this conversation. I was wondering if I was expecting too much. It's been a week and I still haven't met the bath nurse, she's been sick. I said that's fine I don't want her to come if she's sick especially since I don't remember even the nurse washing her hands when she was here. Not that she even got close enough to my mom to sneeze on her. I don't think she was very bright and for sure she was in a hurry because she had her purse on her arm & keys in hand for 5 of the 10 minutes she was here. My mom is still in good health inspite the lung cancer spreading to brain and liver so I do have a little time to ensure maximum care on my own. I'm glad for the hospital bed they gave us, but she needed a few weeks to recover from the 5 salespitches about hospice. She was getting depressed from the hard sell. She's ok now and we hope to really enjoy our final months or years together.
Posted by: margaret | Mar 6, 2007 5:55:41 PM
I agree with everyone and am appaled that your family received poor care. I work PRN for a local hospice and I 've never heard of standing back because I “had not established a rapport with the patient.” Hospice is for the patient and family to receive peacful end-of-life care and I am so sorry that did not happen with you.
Posted by: Helen | Jan 10, 2007 9:21:36 AM
I, too, am very sad you recieved the poor hospice experience you describe. I also agree with many others who state companies they have worked with are all about the money. I even felt that some mis-represented the hospice benefits inorder to get the patient/family to sign the admit. I have worked for several hospices over many years with the most recent one curing me from wanting to work for hospice ever again (it was a major, well established, long time company). I found the training sad, the support from managers and on-call supervisors lacking and critical, and their expectations revolved around the next admit. Often I would be at a patient visit and paiged to go to an admit. I did not like to rush the patient visits, but the office would paige and paige - "where are you; why arent you at the admit yet, etc". On one instance, my patient was unable to swallow and the nursing supervisor of the nursing home was insisting she be given fluid even after I had explained to this LPN supervisor the dangers of aspiration which she should have alredy known. The family understood after the concept was explained to them. I was "severely" counseled because the LPN supervisor was upset and they were a "big client." Forget patient safety. HHAides can be good or lazy, like most folks. I always checked vitals just to know where in the process the patient was, but only told the family if they asked because they usually had no idea of the values and usually asked "are they normal?" If they were medical, I usually did report v/s. Definately, the family should make administration aware of their complaints.
Posted by: mj | Oct 15, 2006 11:41:00 AM
I only wrote about this experience with Hospice as I had met up with the same circumstances in 1993 with my own father's death at home.
Judy- you said it best- I too would want my best friends, who all happen to be nurses in various specialities, taking care of me and advocating for me.
They did - when I had brain surgery for DBS placement. And as always, my best friend was with me too.
I also wrote this blog to hear from others if they had experienced some of the things that we recently experienced. To see if things had changed , improved or not ? And to ponder about the how Hospice nursing can be improved for everyone.
Posted by: beka | Oct 14, 2006 5:37:28 PM
Having spent the last nine years in hospice, I was disheartened to hear of the poor care you received with that particular hospice agency. The philosophy and care of all hospices should be based on the same conditions of participation. My personal reasons for going into hospice work were based on professional autonomy, holistic care, utilization of clinical skills and positive outcomes for patient and families. When we can walk into a room and they feel better just because you are there, is humbling. When you make a tough situation better because of your skill and knowledge, it provides impetus for being the best you can be.
As a hospice administrator who has daily contact with patients and families, I encourage you to write a letter of concern to that hospice. If you do not receive an adequate response, and they are a Medicare certified hospice, file a complaint.
Posted by: Catherine | Oct 14, 2006 2:59:45 PM
I do not agree that doing vital signs, such as blood pressure did any good. A BP cuff causes pain and discomfort in well people. Not assessing TPR, that could have been done. Possibly the Nurse was overwhelmed with the "care" that you all had been giving. I have done hospice care in the home and now as a staff nurse, I do it in the hospital. The patient that is in the hospital that becomes hospice gets the same care. No difference. They are still an inpatient. I am glad that you were able to be there and lend guidence to the CNT. The RN's have to do so many in their case load,frequently not given enough time to make it with traffic, etc. I stayed 12 hrs with my patient when I was a LPN. That I liked. When I did this as a RN, I was very disappointed. I had to run the show on several with not enough time to do the good job that I was capable of doing. So I no longer work home hospice.
Posted by: Carol | Oct 14, 2006 10:29:29 AM
Dear Beka, I was appauled and very saddened to read about your Hospice experience. Having had 4 years of Hospice experience, as an LPN, I am sorry that your friend had to experience pain and indifference at the end of her life. A consiencious, caring nurse would have at least had Roxanol on board immediately at the first sign of respiratory distress and/or pain! Usually a Fentanyl patch is already ordered. Continuity and compassion are precursors for an effective hospice organization. We grew very protective of our patients and were in touch with caregivers often checking on status and pain issues. So many nurses are clueless as to the "honor" or caring for a human being in the last stage of life. My prayers are with you.
Posted by: carla | Oct 12, 2006 6:52:55 PM
Dear Beka: I was so saddened to hear of your negative experience with the hospice RN and HHA. You need to know that this is not the way Hospice care should have been. Thank goodness that you were there to be an advocate for your friend. I have been a Hospice RN for 14 years and it sounds to be like there was a lack of preparedness and anticipation of your friends declining status and need for changes to her pain management. The role of a Hospice RN is to anticipate pt's needs and plan for them rather than to react to them in a haphazard manner. Again, I am so sorry for your experience.
Posted by: Susan | Oct 12, 2006 1:40:52 PM
I teach palliative care and hospice - doing 7 hour seminars all over the US and I understand what you are sharing with your awful experience. I am so glad you were there to advocate for the right care. It is an abomination to the couragous leaders and volunteers of the hospice movement to demean patient care to the extent you shared.Sorry to say, Medicare needs to know about these folks. There wasn't any part of the care your loved one received that was appropriate. I hear similar stories and short cuts to the bottom line. It is unacceptable. Families need to be more empowered to discharge such hospice programs and enter another. Writing appropriate complaints and meeting with CEO's of such hospices (not going alone) is important. Soon the word will be out and they'll go belly-up. It's not just the hospice industry that is suffering from uncaring or ill-prepared staff. My own "alma mater" hospital had the worst nurses I ever encountered during my post-op experiences the past two years. No pain assessment, no gloves or hand washing. When I gave them my own pain intensity number, they could care less. When I asked for specific drugs for pain, I became suspect. I got less than ever.The last surgery I had, I hired my own good nurse friends to be with me for 32 hours as my advocates. Best money I ever spent. The world of medicine, compassionate caring, and ethical practice is not the same as we experienced and worked in, even 10 years ago. But each of us cam be a more outspoken advocate for the patients we serve, and we can write letters, educate others, get on local and state committees and lead the way to better care, even in a small way. Nurses are assertive fighters, are we not? It's not a popularity contest out there...it's life and death; and how people die is extremely important...we have to make it better. And assisted suicide is never the answer.
Posted by: Judy Dobson | Oct 12, 2006 10:55:36 AM
As a recently "terminated" Hospice RN I can truly understand your disappoint. In the neighboring county I was asked to make some visits by corporate. What I found in that county was disgraceful...Lung CA and COPD patients without O2,patients with CHF being told that the nurse coming in the latter part of the week would deal with 3+ edema in ankles, less not forget the congestion in the chest, patient with URI and UTI with a call placed to MD for antibiotics. MD reply-this family has no money for antibiotics, my reply will then Hospice will have to pay. tHAT GOT ME WRITTEN UP, NOT THE MD, who just so happened to be the medical director for Hospice in that county. That MD was not going to prescribe needed medications D/T income. I would be told what Dx guidelines to use before I evaluated the patient. It was much liked when I asked OK Then who will be signing the admissions papers? I've witnessed Hospice RN's in this company being rude not only to families but to PATIENTS.This Rn believes Hospice is a calling, its in my heart. All Hospices should be NON PROFIT. The minimalist care I saw with this company in (Corp)in Spartanburg SC was appalling. I was told I spent to much time with Pts and families one hour and half 2xweek. I was told scapalomine was an expense for terminal congestion, forget fent. patches. It all comes down to numbers and the bottom line. The marketing ehtics they use are very questionable also. If I appear indifferent-I am. This SC hospice is NOT what Hospice should be, its just the bottom line...
Posted by: Meg Smith | Oct 12, 2006 8:57:05 AM
Beka, I've been wanting to say hello....
What a sad thing to be having such a bad experience with hospice. It certainly flies in the face of what we expect. If there's any time I think that we expect truly compassionate care it would be at the time of a loved one's death. (Of course, we expect it always, but especially then!)
I feel so blessed that, when my mother in law came to live/die with us, we had wonderful hospice care. They were right there with what we needed and even dealth with over the phone when Marion (and we) were having a spiritual crisis.
I hope that what you are describing is not the norm. But that doesn't make up for what you, your friend, her sister and their family are experiencing now.
Posted by: Julie | Oct 11, 2006 8:35:28 PM
Im also sorry you had such an unsatisfactory experience with Hospice. My mother's death from metastatic ovarian cancer was made so much easier because of the care she received from hospice.
Kaiser's hospice care was wonderful. A team of an RN, aid, social worker and chaplain ministered to the whole families' needs not just my mom's. Every member of the team was so loving, skilled and caring! All of them valued the death process as an important part of life.
I pray that your next experience with hospice will be a posisitive one.
Posted by: | Oct 11, 2006 1:45:08 PM
As I read your comments, Beka, and the replies of everyone else, I notice one thing: we are all still very dedicated to our callings. The difficulty with being a nurse is that we feel needed by friends and family as well as our full-time jobs, which frequently causes a lot of conflict and emotional exhaustion. My family has had varied experiences with both hospice and in-hospital end-of-life care. Wouldn't give you a plugged nickel for at-home hospice care; I know a lot of hospice nurses have made posts here, God bless you for your work, but our experiences were not positive. At the time of a loved one's dying process, we are just not emotionally capable of doing the footwork of trying to find the "right fit". Wish we could have some of you with us for my father and my mother's 3 brothers (all of these deaths occurred within 2 years). Two of my uncles had in-home hospice; the nurses were not present at their deaths, even though they were called hours before it happened. After the first 3 deaths my mother had experienced, when her youngest brother died, she knew the imminent signs and had my aunt call for the hospice nurse, who said "call when it's over". The family who were there were present with him because my mom said, "if you have anything to say, do it now." The in-hospital care, however, wasn't much better. When my father died, it was my mother who insisted to the nurse that she needed to re-assess him when Mom realized he was Cheyne-Stoking. The nurse, whom I had known as a passing acquaintance from floating to the units she'd worked on, tried to tell my mother nothing was wrong, "it's just his medicine working". . .or something to that effect. Unfortunately, I was at home rounding up our children to go to daycare because I was preparing for a long day of sitting with my family. After 2 long years of chronic illness, I really did not think Daddy would go as quickly as he did. COPD, CHF were long-term illnesses, and the oat cell carcinoma the last year took a while to spread its ugly mets to his brain (the chemo he requested after much thought and prayer and discussion bought us time). I walked in 10 minutes after he passed away--just as the resident walked into the room to pronounce him. I was thankful that at least he got to see our youngest daughter, who was 6 months old at the time. The lesson in all of this for me: try to give my patients the same care and dignity I want for my family. The rest I can't control and have to let go of.
Posted by: | Oct 11, 2006 12:35:02 PM
So sorry for your experience. The pain control could have easily been dealt with. i.e. insuflon and morph. sq until pump arrived. Crushed meds not good for someone who can't swallow.
There is little benefit to doing VS on the imminentley dying..other than temp, families find this difficult, but unless you're going to act on findings, there is little point to this exercise.
Please find a way not to drive if not allowed, don't want another palliative patient as a result of an accident.
Posted by: elizabeth | Oct 11, 2006 11:58:55 AM
Please do not blame poor care on the profit status of a hospice- that has little to do with the care delivered- it sounds like this was an extremely poorly managed case, and i hope that someone spoke to every manager available at this hospice and described the appalling care given. It makes me terribly sad that you all had such a bad experience- hospice is an extraordinary gift when done right- I myself will never do any other kind of nursing again....
Posted by: rikki | Oct 11, 2006 11:49:06 AM
In the age of for profit hospices, many people have entered the field who are not trained and have to go through guidelines in order to save money. The pump is an example of this. Please support your not-for-profit community based hospices. Yes, hospice houses are wonderful and treatment there is usually very good. There are going to be changes in the reimbursement structure of hospice very soon. Hopefully this will weed out the ones who are in it for the money.
Posted by: hobson | Oct 11, 2006 9:40:15 AM
It was very much the same kind of minimal care that my husband suffered through when he was dying of lung cancer. I am 68 years old, and all of his care fell to me. We occasionally had an aide come to bathe him and change his bed, but feedings, medication, and incontinence care was my job. Finally, when he became very restless, trying to get up(he couldn't stand anymore), fighting the O2 tube, I couldn't keep up for 24 hours a day, and I begged and begged for them to transfer him to Hospice House where I could stay with him, but they could do the hard physical. I had to deal again with the social worker, with 2 nurse supervisors before they transferred him. He died about 12 hours later. I really expected more, I had heard about how wonderful this hospice was, but I was really disappointed. I am a fairly recently retired R.N. so I know what kind of care should have been offered. Beka, you and your friends are in my prayers now.
Posted by: mary | Oct 10, 2006 9:46:37 PM
I am also so sorry to hear about the bad experience. I am a manager and my nurses have keen assessment skills and are highly trained in pain and symptom management. Hospice is not only a nurse it is a whole team. We focus on the physical, emotional, and spirtual care of the patient and family. The Social Worker, Chaplin, Nurse, CNA, Hospice MD. all assess pain and the nurse is notified of Pain crisis. We treat the whole patient and family. We are there to increase the quality of life, while maintaining dignity. We do a complete physical assessment and make sure that we are treating the right symptoms with the right medications. Goals of care are discussed with the patient and family and we work very hard to meet those goals. One of our goals for all our patients is a peaceful death. We try to minimize symptoms so that the time the patient has left is that of the highest quality. Our patients and families should always feel that they are the most important patient and our staff should never make a patient and or family feel badly about their care. So again I am sorry for your bad experience and please know that there are dedicated highly trained hospice staff providing expert medical care to patients all around our country.
Posted by: cindy | Oct 10, 2006 9:00:06 PM
I've been a hospice nurse for 18 years - lately primarily in education and orientation. If I were to hear of your circumstances such as you described, I would be having a heart-to-heart with that nurse... pronto! Our care is still holistic and patient-family centered. Pain is considered an emergency and is responded to and treated as such. I will be charitable and hope this nurse is new and needs significant continued education; if she is "seasoned" (I never use "old" any more!) she needs some professional counsel. As hospice has become part of "modern medicine" we are convinced that with attention and effort we can retain the hallmarks that have distinguished hospice since its inception - a model of care AND caring.
Posted by: Pat Huls | Oct 10, 2006 8:25:42 PM
I am so sorry that you had this experience. It is so unacceptable. All hospices are different but the characteristics of a great hospice nurse are the same. This situation should have been treated warmly and compassionately, with much support and reassurance given. I am a hospice nurse and grow so attached to my patients and families, developing a bond even after a few visits. My "stable" hospice patients may see less of me during the week than others that are actively dying but all of the nurses cover for each other so that no family/patient is left alone when they need us. We are fortunate to have a hospice home which is a beautiful facility filled with love where families can come if they are uncomfortable or anxious at home. This should not have happened to you and I apologize on behalf of all of the hospice nurses that view hospice nursing as a calling, not a job.
Posted by: jen | Oct 10, 2006 8:05:37 PM
Oh Beka, I am so sorry you had the experience you had with Hospice. That possibly could not be the standard. All Hospice staff that I have ever encountered have become attached to the patient and the family. This nurse acted like it was an imposition for her to do her job. If she is burned out, she needs to go elsewhere. Hospice is not necessarily for the dying patient but more for the family memebers who grieve and are left behind. 5 hours for a pain pump? Inexcuseable. No one should fell pain for any length of time. Crush Oxycodone???? Wow, she needs to go back and do med cards! Nothing that was asked of the staff was "too much". I am apalled at the care delivered.
Posted by: cindy | Oct 10, 2006 4:45:50 PM
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