Administration of Medications to Residents Receiving Hospice Services
Operating a Residential Care Facility for the Elderly and providing outstanding care for our residents can present many challenges, especially considering increasing acuity and higher levels of allowable care. If you are caring for residents receiving hospice services, which can be a very spiritual and emotionally rewarding experience for the care provider, it can multiply these challenges while providing compassionate care and a dignified end of life. No one wants to see their resident suffer the pain that unfortunately often accompanies the health challenges that occur in the end stages of life. Physicians have the enormous responsibility of utilizing their skills to make the residents’ time on hospice care as pain free as possible while we, as care providers, have the equally important responsibility to enable the resident to pass from this world in a dignified manner and move on to the next stage of their existence as their beliefs and spirituality guides them. When our resident is in pain, we ensure that their prescribed medications are given when needed. One of the aforementioned challenges is administering a medication when the resident is not able to participate in the administration. As we all know, unlicensed staff cannot administer medication, only assist the resident with self-administration. What are our options when we do not have a nurse on-site? The hospice nurse will visit the facility and will administer the medication, but in the real world this is not always a viable option. Pain follows no schedule and the alleviation of pain must be an available option as needed.
There has been much confusion on one available option for the resident receiving the medication when care staff cannot administer it. In the real world, on an everyday basis, residents’ family members have been administering their loved one’s medications. Community Care Licensing has not been able to develop a decisive decision on this practice. Is it allowable under regulation? In the defense of CCL, they have many conflicts to sort through. They must consider the best interest of the residents while considering the requirements of the Nurse Practice Act, Title 22 regulation, Health & Welfare Institution Code and more. It is not through lack of effort, and certainly not through lack of concern for our residents, that CCL has not reached a consensus on this practice. That is until now. They have concluded that a family member may administer medications (oral and injections) to their loved one as long as this practice is reflected in their service plan, that they are trained appropriately to do so, and the facility has a plan in place to ensure that if the family member is not available, a hospice nurse is available to give the medication. This decision will allow many residents to remain in the community and experience the loving care that they have grown accustomed to receiving from our care staff while in the end stage of life.
While Community Care Licensing cautions us that this decision may only be temporary while all legal, regulatory and resident care issues are scrutinized, we all hope that they come to the conclusion that the best interest of our residents is the motivating factor that we all share and that this policy should be permanent. Many thanks to Community Care Licensing for their tireless efforts in addressing this issue.
I always concur regarding this matter. When the family is not available and the staff nurse is not always present (although the hospice agency said that they are available 24 hour service) to administer meds.
One particular time in our facility I cared for an hospice client. I requested to switch pain meds into a patch form, one of the on call supervisor said, “it is a good idea, but you are shortening the life of the client”.
I had the same experience with a Hospice supervisor telling me that the patch would make my resident “stop breathing”. When I looked up information on the Duragesic Patch, it was clear that a slowing of respirations and decreased blood pressure are some of the side effects but “shortening life” was not identified as a result of using this strong but beneficial medication properly. Duragesic 100 is about equal to a combined dose of 360mg of morphine daily. When applied, the Duragesic patch peaks at 12 to 24 hours then maintains a constant dose for the remainder of the 72 hours making it an ideal solution for pain management of a dying resident who cannot manage their own meds any longer. As with any narcotic, the resident must be assessed prior to administration to ensure that breathing and blood pressure are not already compromised. Dosage may need to be started at the lowest rate and increased as tolerated. After application of the patch, the resident’s vitals must be monitored to detect any signs that breathing or blood pressure are falling into unsafe levels. Determining what’s best for the comfort of the resident should be a group decision with resident and family participation (if possible). Assuming the risk of “shortened life” is not for the supervisor to determine. Hesitation to provide this type of medication may more likely be due to cost. My resident’s Duragesic patches were costing about $1500 per month. If your resident is Medicare age, Hospice (who gets paid by medicare) usually has to absorb the cost of medicaitons.
You are probably correct regarding the duragesic patch being cost prohibitive for the hospice agency. I am blessed to be able to work for a non-profit hospice agency for the past 7 years. What is best for the patient (resident), is what we provide regardless of the cost. The one thing about the patch that needs to be carefully monitored is it’s effectiveness. There needs to be some subcutaneous fat for the medication to be absorbed. It is frequently ineffective in thin little residents.
It was stated that CCL has said that family members can administer hospice meds. to their family living in an RCFE.( if the hospice nurse is not available) _Where is this stated on paper and if so does the facility need something in writing to protect themselves? Thanks
END-OF-LIFE ABSURDITY: How many people (particularly the very elderly or demented) have the mental presence & skill to understand and self-administer their own palliative medications?? At the very point when they are weakest, perhaps in the most discomfort, or obtunded, the new rules ask them to “administer’ their own meds. EGAD: Many cannot even open their eyes. The logic of the new rules is, well, NOT Logical. Fast acting (Roxinal) and long-acting Morphine Sulfate (MS Contin) have long been the major drugs of choice, for pain ( and SOB — in the case of Roxinal). Wrong-headed, old-fashioned MYTHS that “MS will suppress breathing and/or hasten death” require hospice Nurses to regularly clarify and reinforce the facts to patients and family. Hopefully, we would not have to explain this also to RCFE & SNF nurses and non-medical administrators.
Sublingual ROXINAL (fast-acting MS) is easy to give & does NOT suppress respirations–in fact, it relaxes the diaphragm and HELPS Resps. As an MD I know said: “this is the BIGGEST Myth about palliative care and it is dangerous.” We often give Roxinal (MSIR) to patients with Respiratory conditions, with great success. As for the patch (Duragesic), hospice uses this strong level of pain control mostly for pts who cannot or will not take oral medications—but it does NOT KILL Patients! I have encountered non-medical FACILITY MGRS who try to dictate through “policy” what HOSPICE MEDS are safe or appropriate to give patients. POLICY SHOULD NOT TRUMP patient care—especially at the very end of life. No one should die in pain. I sincerely wish the State Rulemakers would relax their RCFE rules and apply the logic of End-Stage care. HOSPICE CARE is not about starving, suffocating, harming or hastening the death of the (already dying) patient; we ARE about easing their way so that they and loved-ones may simply BE TOGETHER at this precious time. Thanks for listening.
My mother recently passed away with terminal lymphoma. My mom allowed the use of roxinal after much hesitation because of difficulty breathing. The hospice nurse informed my mother and me that the roxinal would trick her mind to believe that her breathing was better. We also gave her pain medication. During Mother’s last days she wanted so much to talk to “her daughters”, but was unable to. Since her death I have felt like the use of roxinal and pain medications was akin to helping us help our mother die maybe sooner than God had intended. The night before Mom passed she tried to refuse the roxinal – even in her severe state – but it was given to her anyway. Please, someone convince me, that I did not “help” my mother die.
Rita,
I was just recently in a similar situation with my father. He had a pretty severe cerebral bleed/stroke and began declining while in the NICU 10 days post-operatively. Since he had an advance directive, he was discharged to home with Hospice care. He was never really that anxious or agitated, however he wouldn’t keep the 02 on and his saturation level was below 90 when he was discharged from the hospital. He was very congested and was in a sustained A-fib. Naturally, he was severely compromised but never really that agitated nor appeared to have air hunger. I was instructed by the hospice nurse to give 2mg of Roxinol q 1hr. after her initial assesment of my father’s condition. I followed her instructions. I almost witheld the last dose giving it 1/1/2 hrs instead of 1/hr after the last dose. He died within 6 hrs. I’m still feeling uncertain if I did the right thing. Being a nurse myself, I am haunted with the notion that I may have hastened his death. I know he wasn’t going to last more than 48 hrs but I still feel that perhaps I shouldnt’ have dosed him as often as I was instructed. It’s very different caring for a patient than caring for a loved one. I question whether I was able to be objective at all. I feel not.
Thank you, thank you. As a Christian woman and a woman who dearly loved her mother that is what I have grieved about the most. I believe God determines the day and hour a person dies and that it is not up to any human being. I will have to get past my feelings of responsibility, but it really helps to know that someone else….especially a professional nurse….feels the same way I do. I hope someday to be able to get the look on her face when I gave her the roxinal the night before she died out of my mind. It is up to us to educate loved ones what they are facing when they sign up with hospice. While the caring for Mom for 8 weeks was difficult being without her is far more difficult.
DEAR RN:
Condolences regarding your dad. AND….You did fine. In Hospice care, Roxinal SL is in such a small doses and helps pain and respiratory difficulty. It acts quickly (within 20 min) and can be given even to the obtunded, dysphagic patients. I have had some cancer patients getting 30 mg q 2hrs on top of having a duragesic patch. Some E/S distress requires this much.
At a meeting recently, a very experienced hospice MD said: “Roxinal does NOT suppress breathing or hasten death! That is one of the biggest myths about hospice. ” (Dr Susan Londerville)
A dose of 2 mg is almost NOTHING. Most patients get 5, 10, 20 mg or more q 1-2 hours when near death and having E/S symptoms. You DID NOT and COULD NOT hasten his death this way. You did just fine.
I have been a Hospice Case manager for 6 years and feel NO concerns about using Roxinal. Not only is it very beneficial, but it is Standard care. NOT giving it would be worse and 2 mg is so low as to be negligible. I know this to be true from the 3 hospices where I have worked.
It is unfortunate that RCFE staff are no longer allowed to give PRN Roxinal as in the past–especially to the actively dying. . With training, they do just fine. The “regulators” screwed up with their new Title 22 Rules. How can a dying patient ask for and give their own Roxinal? (as the rule requires). That is simply nutty and does a disservice to the dying and their caregivers.
Sincerely,
Linda M Jekel, RN, MS
Mtn View, CA
Dear Rita:
Thanks for replying. I have a few additional thoughts:
What caregivers “face” when hospice comes on the scene is a chance to allow loved ones to die comfortably at home and with those they love.
Hospice empowers the patient and family, emotionally and with care skills. We try to replace fear with trust and serenity. We do not remove hope, but look toward creating as many good days as possible.
AND….There very much is such a thing as a “good death.’” You, as a Christian, could help dispel MYTHS about hospice such as “it is giving up or throwing in the towel.” Hardly. Hospice is an earned Medicare benefit covering caregivers, medications, and equipment. Too many MDs are way too slow to refer people to hospice, and families need to ask for the help. Many patients receive care for months. Some improve for a while and can be signed off until need returns. Remember, GOD created the caregivers as well. Hospice still offers options–not the least of which is god old TLC. I think GOD created Hospice!
Again, sincerely,
Linda Jekel, RN–Hospice Case Manager
I came across the issue on the RCFE administrator telling my hospice patient’s family to transfer her mother since nobody dies in her facility. The patient was dagnosed with metastatic breast cancer and was in her facility for 3 months, bubbly eating well and was not on hospice yet. transferred to the acute hospital, and while the patient was there she was visited by the hospice administrator patient told her that she wanted to come back to her home, She agreed also on the pretense that the patient will be on hospice care. Patient was on continuous care but when the hospice board certified palliative care and hospice MD came the administrator told him that she wanted the patient to be transferred to the hospital. The daughter was devastated and the MD was surprised. The reason is because the administrator said that she dont want to have problems with the licensing. . Patient passed after 12 hours. I think that the licensing has to be more clear with hospice patients and the care in the RCFE. Families wanted a home setting specially at the end of lif VS. Nursing home. But with the regs with RCFE, RCFE dont want to accept Hospice pts. which is an irony.
This is just a general note to all hospice workers everywhere. Thank you with all my heart for your help with my Dad four years ago and my Mom just a week ago, To all the grieving folks left behind and in doubt that they did the right thing…if you helped your loved one by bringing in hospice care, you did the right thing. Ask that hospice be available for you, when the time comes. And, by the way, remember this…you will be just fine when your time comes…
Bruce McKalson
My fiance is under Hospice care with hepatic failure. He is 47 years old. He also suffers from diabetes and congestive heart failure. His death is inevitable. However, the Hopsice nurse that he has has no concept of listening to the patient. He does not want to live in extreme pain, yet he wants to be coherant enough to be able to live the quality of life that he wants. Whenever the subject of pain comes up (every visit), his nurse says it is the disease process and I will ask for more morphine. He has a drug history and morphine does not work for him. If any one has any suggestions to get the Hospice nurse to really hear what he is saying, please let me know.
I understand what you are saying completely. I went through these same feelings when my mother was terminally ill in 2009. My mother’s wish was the same. She had lymphoma and wanted to be coherent and live life as best she could but she did not want to be in pain. It seemed the hospice nurse didn’t understand the “live life as best she could” part. She only heard my mom didn’t want to be in pain. She discussed the drugs and discussed the drugs – morphine and others – until mom acquiesced. Once on the morphine there was no going back. As I look back more than a year since her death I have begun to understand that a terminally ill patient cannot live pain free without the drugs and the drugs are so powerful if they are to control pain the patient cannot be coherant. I am so sorry about the suffering you, the loved one and caregiver, are experiencing. Hospice provides us the opportunity to care for our loved ones in a less sterile environment than a hospital or nursing home, but the days of care can be difficult, wonderful, disappointing, angering, and a blessing at the same time.