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.

23 Responses to “Administration of Medications to Residents Receiving Hospice Services”

  1. 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”.

  2. 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.

  3. 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.

  4. 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

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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

  10. 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

  11. 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.

  12. 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

  13. 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.

  14. 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.

  15. Today April 3rd my mom was put on hospice and im not happy with it because of the drugs they are going to give her that will most likely stop her heart because she has copd and emphysema, diabetes ,and several back operations and she is fighting for each breath. I realize that I am unhappy because she is so coherent and it sucks to see my mom look so good but feel so bad that she wants to die and the more I think about it the more I cry. So I need to be more understanding about how she feels and not be so selfish but it’s too hard for me to deal with. I really need to prepare myself for my moms death so if there are any words that someone could say to me to help ease my mind I welcome it cause I know im not the only one hurting.
    Thanks for reading and I hope it might help someone else who is also hurting.

  16. Chris, I’m really sorry for pain you feel at the thought of losing your mom. You’re not selfish at all. It seems as though you need for the hospice staff to give you some education about the medications they’re giving your mom. The National Hospice and Palliative Care Organization has done a study that shows that people who get on hospice services early enough often live up to 28 days longer with better quality of life. Morphine is a great respiratory medication for easing shortness of breath for people who are in their end of life. It should not make her incoherant. It may make her sleepier for a few days, but her body will adjust and she won’t be as sleepy (at least from the medication). As her disease progresses she will sleep more and more. This is normal (with or without the medication). It ‘s okay when you’re with her to wake her and visit with her. She’ll go back to sleep, easily. She may doze in the middle of a conversation, but you can pick up the conversation later. Please ask the hospice to take some time with you to get all your questions answered. My prayers are with you.

  17. I have a question about the use of Roxinal. My mother recently was hospitalized with kidney failure. She had been fighting renal cell carcinoma for 6 years and the one kidney she had was not functioning optimally. We had her transfered to a SNF with comfort measures only. The last week or so she was unresponsive to us only opening her eyes briefly when we would speak to her.

    She was prescribed a duragesic patch for pain control when she no longer was able to swallow her meds and roxinal was also ordered PRN. I questioned one of the nurses about giving her the dose when I thought that she was having break through pain. She informed me that this medication was really for when she became air hungry and was strugling to breath and should be saved for such occasion for it would suppress her respiratory system.

    Less than one week ago my mother passed very suddenly. She had been comfortable with no signs of respiratory distress, no labored breathing, BP 94/72. When speaking to the nurse on this shift she told me that she had given her a dose of roxinal because she was uncomfortable when being turned for bathing. I firmly believe this nurse assisted my mothers death before she was ready to leave us.

    Under these circumstances, does roxinal suppress the respiratory system to the point of death? I can’t help feeling that I was robbed of even a day or two more with her.

  18. Dear Sir/Madam-
    I guess you have to dieing to get Roxinal, buy it would be nice to have a fast acting, strong pain killer.
    I was in an car accident where I broke my back, in three places and split my head opem, causing it to be stapled back together. This left me paralyzed from the chest down. My back hurts all the time, and at times it hurts to breathe. I appreciate the dying patient, but what about the possibly living.
    The Dr. had to prove I was in pain ($6000.) MRI to give me codiene?
    What is worng, with this system we have? Now, he is acting like he has to justify this!!! It’s called permanent pain requiring narcotics permanently, Get used to it! Damn paper pushers.

  19. My husband passed away 3 weeks ago after suffering for years with COPD. Along with that he had an inoperable blocked artery in his heart along with stage 3-4 kidney disease. He also had CHF. Because he was getting progressively worse and one day just could not walk 2 steps without having breathing difficulties and had to use his nebulizer whenever he moved a few steps. After speaking with his physician, we came to the conclusion that Hospice would be best because of the palliative care. Thank the Lord for Hospice and their caring and compassionate nurses. I told my husband, so as not to frighten him, that patients have come off of Hospice with improvement, even though down deep I knew he would never get off. His breathing became more and more difficult each day and it causes a strain on his already sick heart but we continued giving him his meds for whatever he took before. Yes, he was on Roxinal and we told him it was a medication to help him breathe so he took it reluctantly because giving him a tyelenol was a struggle. I felt as you that maybe we hastened his death by giving him this medication. I was with him when he passed away, my family was here with him and had been for weeks and that was the best comfort that we could have asked for. The last night of his night he was agitated and having a very hard time breathing. They gave him Adivan and every 2 hrs Roxinal. Hospice did not cause him to pass, Hospice helped him to pass pain free and even though I miss him terribly and the lonliness is almost unbearable, I know that everything to keep him comfortable was given to him and he died peacefully. I did not want to let go and held him in my arms for a couple of hours until he was transported to the funeral home. All the Hospice nurses should be blessed as they are the most sincere, compassionate and caring people that I have ever met and cannot rave about them enough for helping me, my family and most of all, my dear husband. He is now resting in peace and is no longer suffering and that is the peace I can live with.

  20. My father Paul Raidt had four years with us after Pancreatic cancer. Unfortunately some of the treatments played havoc with his bone marrow. We tried transfusions with success until the last month when his body began to react against them. When hospice was called he had a white count of only 8000. We were informed he could easily bleed out. We were also aware his blood pressure dropped to as low as 52/45 when he stood. He tried as long as he could – when he did stand he went into sheer panic trying to just get some air. Hospice was amazing! At times I have wondered if the dosages given of Adavan or Roxinal would shorten his life with us. What they did was give him the ability to relax and breathe. It kept him from the panic and fright. He stayed and held my mother’s hand until his last. What allowed him to transition was the peace and love from his family with the support of Hospice. What allowed him to leave was my Mother saying she would be all right, she had all of us to look out for her….he died within minutes. My mother was also on hospice care at the time – that day was August 19, 2009 – she has PSP. – again we are using Roxinal – we’re lucky to have it and Hospice!

  21. Sorry my response took a while. Also, I am sorry for your loss of your mom.

    Kidney failure affects so much of the other organs,it is often the cause of death in older people. As for theuse of Roxinal (sublingunal Morphine Sulfate Liquid), the nurse at the SNF was only partly correct—Roxinal is used for air hunger or any possible respiratory distress at the end of life, particularly in the last 48-72 hrs. The SNF nurse seemed to contradict her/himself.

    Roxinal IS NOT–I stress–going to suppress respirations. It is easily administered (no swallowing needed), is fast-acting, and has the ability to address PAIN and RESPIRATORY discomfort (plus some related restlessness or anxiety). It is THE DRUG OF CHOICE for handing end-stage pain in cancer patients, for instance. WIth alert patients, I have had many who told me how quickly and how well Roxinal helped their pain or shortness of breath.

    HOW DOES IT WORK?
    The lungs have morphine receptors and Roxinal not only works on these, but it helps relax the diaphragm. It is an ideal medicatgion for easing the discomforts of those close to death (and as a fast-acting aide for breakthrough pain). It is the only such medication I know of that has DUAL-BENEFITS, as it quicklyt helps pain and/or shortness of breath.

    Withholding it in the dying patient is not indicated. Hospice (where I have worked for 8 years) uses it quite liberally. I have had patients receiving 2.5 to 20 mg (or more) every 2 -3 hrs around the clock, as needed.
    There is no sense withholding it for the actively-dying patient. Unfortunately, there still exist some incorrect thinking and myths about its use.

    More education is needed from hospice professionals to be sure it is used correctly—aka, used adequately.

    Thanks for your question; hope this eases your mind.

    Most Sincerely,
    Linda M. Jekel, RN, MS, LNC
    Mountain View, CA

  22. After reading the many comments on hospice pain medication administration, etc, I humbly offer a SUMMARY of some FACTS, as I Know them:>>>>>>
    1. Liquid Morphine 20 mg/ ml (Brand Name= Roxinal) helps both pain and respiratory distress. It is truly useful for FAST relief, for easy under-the tongue administration–and in conjunction with longer acting pain meds (such as MS Contin–meaning long-acting Morphine; normally given in varioius doses, every 12 hours around the clock). Typically MS CONTIN would form the framework for continued pain control. Also note, the FAST-ACTING Roxinal is used for “breakthrough pain” or resp. distress, and given as needed (PRN). The long-acting MS CONTIN (or other) such meds.work WITH Roxinal. A person could, of course, be taking only one or the other, but clearly they each have a role. In fact, slowly introducing Roxinal helps the RN or MD determine what MS dose levels are needed for full, long-acting relief.
    2. No one has to die in pain; there are so many avenues of relief. Sadly, not all practitioners have adequate training in PALLIATIVE (comfort) Care.
    For example, one writer mentioned CODEINE. This is fine for short-term use, but it is very constipating and rarely used long-term and/or in Palliative care. Dilaudid is another med I have seen used in an ICU for a Cancer Patient–even though she clearly came into the ICU with good pain control obtained by Long- and Fast-Acting Morphine ( Ex. MS Contin & Roxinal). Unfortunately, this lady was switched to the Dilaudid injection and the pain came bck with a vengence. Why? I would suppose that short-sighted hospital RX habit is why.
    4. As for the man with the fractured back–and other injuries involving NERVE PAIN–Morphine alone (or at all) may not be ideal for you. For this,
    GabaPentin (Neurontin)–an anti-seizure med–can help due to its nerve system influence. There are several types of pain–gut pain, bone pain, nerve, etc. Nerve pain is sharp and stabbing–and uniquely easy to identify. (Think migraine headache or terrible touch ache). Of late, METHADONE has been used with great success since it addresses nerve and other pain. These meds are started slowly, advanced safely.
    5. You may have to suggest these pain med options. I have done so, and the MDs often said: “OK; I never thought of that.” One of the uses for FAST-ACTING Roxinal is along with MS CONTIN (or other) Neither Roxinal or MS Contin cause death or stop respirations–despite the corny TV shows where someone says: “OH NO…they put them on the morphine.” Quoting Dr. Brad Stuart of the Sutter Hospice group–“Morphine is THE drug of CHOICE for cancer pain relief,” and for many other end-stage needs. Nonetheless, even when caring for an elderly MD with Lung Cancer, I had to convince him that the Morphine (espec. the ROXINAL) would not suppress his respirations. He quickly saw the light.
    6. Duragesic (Fentynl) patches are often used when other relief is not adequate. For example, I had a 50 yr old Pancreatic Cancer patient who needed quite high patch doses to suppress his pain. Yes, they are expensive. I think we run into problems when hospitals slap one of these on the patient as they are disharged. Often too soon, in my view. Then the hospice staff look stingy when they steer the patient appropriately to a more reasonable med for their situation. The PATCH is not a 1st line of pain-control action; for the lack of a better term, it is “overkill.” Safer, cheaper meds are available for regular use. The patch, when needed, is more for advanced, intractable pain. And YES, Medicare expects hospice to use meds wisely, in the interest of overall economy. Why pick a $50- $100 patch, when cost-effective, easier to use Morpine variations work better in many patients. I think Roxinal cost less than $10.00 for a 30 cc bottle.

    Sorry to be long-winded, but there are SO MANY MYTHS about hospice, morphine, and other aspects of comfort care.

  23. Thank you for all your comments. It helps some, but I still feel angry about my mom’s care which is only nearing end stage. She’s had emphysema for years, she suffers from stenosis and arthritis but will NOT take pain pills, recently percocet. Her mind is clear at age 84, my brother has POA and at a recent family meeting the HH care team and my brother rail roaded mom into having him sign for hospice care. All the talk was about morphine. I am a nurse, only recently she was diagnosed with cancer in her sternum. She won’t even take percocet or any other pain med because of side effects, yet they lead her to believe Roxinal is going to be a magic remedy and nursing home care will keep her more comfortable. Here is the kicker, she has anemia and the hospitalization from that is when they found the cancer. My anger and arguement is now they will not monitor her Hemaglobin and give her a blood transfusion, her skin is yellow, she is now convinced by them, why not just let the anemia take her out. I am outraged. My brother has POA but I witnessed a combined badgering of facts to talk her into having him sign her on to hospice. I want her anemia monitored and treated, what are my options.

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