Lesley’s Palliative Care & Hospice Initiative
New OBRA/SOM Revisions!
F 155, F309 & F322
Anti-Psychotics, Dementia, Approaching End of Life, Tube Feeding
Quality of Care F 309 has recently been revised. The section Review of a Resident at or Approaching End of Life in the revised Interpretive Guidelines states “Dying is often a process, rather than a single event, with death being the endpoint. Providing appropriate care related to dying involves ongoing recognition, assessment, and response to the resident’s needs and goals. Palliative care may be appropriate regardless of how near he or she may be to the end of life. As a resident becomes unstable, experiences increased symptoms, or identified as nearing the end of life, he or she may be an appropriate candidate for care focusing on palliation rather than cure. Palliative care focuses on symptom relief and comfort, but does not necessarily limit diagnostic, preventive, or curative interventions. Studies have identified various factors that are considered important for a “good death,” including exercising control of decision-making and selection of a decision maker: adequately managing pain and other symptoms; trusting one’s physician; avoiding intrusive, unnecessary procedures and a prolonged death; being kept clean; being comfortable with the staff providing the care; knowing what to expect regarding the physical condition; strengthening relationships with loved ones; having someone to listen and to be present; and maintain one’s dignity”. This revision is clear that we make sure that all Residents’ are aware of all of their choices including approaching end of life choices such as palliative care and hospice. Facilities must literally add “Palliative Care and Hospice” to the list of Resident Rights as an available resource. Residents, interested family members and/or legal representatives must have a very clear understanding of what their rights are, how and where in the facility these rights are being ensured. This must be documented in the Resident clinical chart. Not providing education about Palliative Care and Hospice as a Resident Right could result in a deficiency 42 CFR 483.10 (b) (3), (d) (2), F154, Notice of Rights and Services, Free Choice.
Right to be Fully Informed of Health Status F155 has recently been revised. The revision is in the Interpretive Guidelines and very specific to a Residents right to accept or refuse treatments and to formulate an Advance Health Care Directive. The main point being made is not only do Residents have the right to accept or refuse treatments but the same right to accept or refuse “life sustaining treatments”. The overview of the revised Guideline states “As technological advances have increased the ability of medicine to prolong life, questions have arisen concerning the use, withholding, or withdrawing of increasingly sophisticated medical interventions”. The “Advance Care Planning” in the overview of the revised Guideline also states “In order for a resident to exercise his or her right to make knowledgeable choices about care and treatment or to decline treatment, the primary care provider and facility staff should provide information (in a language and terminology that the resident understand) to the resident and/or his/her legal representative regarding the residents’ health status, treatment options, and expected outcomes. The ability of a dying person to control decisions about medical care and daily routines has been identified as one of the key elements of quality care at the end of life. Advance care planning is a method to further a resident’s control over his or her own medical treatment and choices. It also allows the decision-maker (whether it is the resident, family or other legal representative) to be better informed about the treatment alternatives available in a variety of circumstances”. The new revision is clarifying that Residents must also be made aware of negative expected outcomes including approaching end of life. This new revision is very connected to the revision in F309.
Tube Feedings F322 has recently been revised. The Interpretive Guidelines have been revised focusing on all Tube Feedings having a benefit to the Resident specific to Quality of Life. The overview in the Guidelines states “A decision to use a feeding tube has a major impact on a resident and his or her quality of life. It is important that any decision regarding the use of a feeding tube be based on the resident’s clinical condition and wishes as well as applicable federal and state laws and regulations for decision making about life-sustaining treatments. The interdisciplinary team, with support and guidance from the physician, is responsible for assuring the ongoing review, evaluation and decision-making regarding the continuation or discontinuation of all treatment, devices or approaches implemented to care for the resident. Involving the resident, family, and/or the Residents, legal representative in discussions about the indications, use, potential benefits and risks of tube feeding, types of approaches, and alternatives helps support the resident’s right to make an informed decision to use or not use artificial nutrition and hydration”. If a Resident is on a Tube Feeding it must be unavoidable, the Resident and/or legal representative must be aware of all options/choices including the option of declining and all alternatives including Palliative Care and Hospice.
Recap: All three regulatory revisions are clearly stating that facilities need to be more aggressive in Resident alternative choices specific to all those approaching end of life. All residents approaching end of life, the Dementia & end stage Dementia Resident and Resident’s on tube feedings. Medicare created these revisions to assist facilities in advocating for the rights of the resident in the dying process. It is the responsibility of facilities to ensure that Residents and families are aware of all alternatives and available resources including a dignified and comfortable death.
How do we meet these new requirements?
Previously, the concern has been to not overstep legal boundaries by the facility in regards to recommending Palliative Care and/or Hospice. We have always made sure that it was a Physician referral, Resident or family request. Facilities never recommend Palliative Care and/or Hospice. We inform Residents and/or family that Palliative Care and Hospice exists when we think it appropriate and suggest they discuss with their Physician if Palliative Care or Hospice may be an option for their loved one. As of November 31st 2012 Federal Regulation/Law F309 requires that all Residents and/or families in a SNF must be educated on Palliative Care and Hospice as an available resource and a Residents’ Right.
Now the question becomes how do we educate the Resident’s and/or families? It can potentially present a liability issue for facility staff to educate on Palliative Care and Hospice. An individual must be trained to educate on Palliative Care and Hospice. To refer someone to be educated is very different than taking on the education process in and of itself. Hospice companies have Palliative Care Consultants and Hospice Educational Liaisons who are literally designated to be the “educators” within the Hospice Company. This new law gives us license to utilize the Consultants and Liaisons to meet these new revisions. By the facility staff referring to these “Educational” Consultants and Liaisons we meet the requirements without the facility taking on the liability of such an educational discussion. A facility can utilize this service upon admission or as needed. I suggest upon admission with all of the other Resident Rights requirements. It’s the most common sense way to do it. This way, all Resident s are aware of Palliative Care and Hospice as one of their rights and it can never be said that they were not informed.
How do we organize this 15 minute face to face or phone call between the families and the Palliative Care Consultants/Hospice Educational Liaisons? I have provided an Acknowledgement of Palliative Care and Hospice as a Residents Right CLICK TO DOWNLOAD for you to use as is or adapt to your preference. You may also want to add an “Educational Fact Sheet” on Palliative Care and Hospice, created and approved by a Hospice Company, to your Acknowledgement Form as part of you Admission Packet. For liability reasons and because Hospice Companies are the specialist in this area, it would be best for the Hospice Company to create this “Educational Fact Sheet” rather than the facility. You would need to approve both the Acknowledgement Form and the “Educational Fact Sheet” in your QA/Patient Care Policy Committee so that you can add them as part of your Admission Packet and process. It will now be an addition and the same as all other Resident Rights that you explain and have signed upon admission because you are required to. Your Admission Coordinator will briefly explain that Federal Regulation/Law now requires Skilled Nursing Facilities to not just offer Palliative Care and Hospice, but that the facility must ensure that all of the Residents and/or families understand what Palliative Care and Hospice is and understand and recognize that it is an available resource to them per their choice. Your Admission Coordinator should continue by explaining that the education on Palliative Care and Hospice is best done by a Consultant/ Educational Liaison”. It is for this reason, that the facility will arrange per the Resident and/or family choice either a phone call or a face to face with the Consultant/ Liaison for educational purposes only. It is not a Hospice evaluation but rather a Resident Right which you are now required to enforce by Federal Regulation/Law F309. A facility will still need to have assessment protocols for approaching end of life during a residents stay but at least the facility has educated and informed the resident and/or legal representative/responsible party of this right and available resource.
So what Hospice Company is going to be able to meet such an intense educational need? Any Hospice company of your choice that you currently work with or want to work with will most likely whole heartedly be willing to provide such a service to you. It is an opportunity for them to not only educate on Palliative Care and Hospice, but to also promote their own company in providing such a service. It is a perfect situation for them. It is a win/win for residents, families, facilities and Hospice companies. This is an unbelievable opportunity for them to “partner with Administrators” in meeting the new regulatory requirements. As for the “Educational Fact Sheet” previously mentioned, Hospice companies will either already have such an “Educational Fact Sheet” or would be very willing to create one for your specific purpose. As Administrators, we are always looking for vendors who partner with us to provide quality of service in the most efficient way for our resident’s and families.
“Palliative care” means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.
“Hospice” means a public agency or private organization or subdivision of either of these that–is primarily engaged in providing hospice care to terminally ill individuals.
Frequently Ask Questions:
|Q:||Why can’t I just refer as needed? Why do I have to go through all of this for all Residents and families?|
|A:||When you review these revisions, you will understand that it is very controversial regarding when an individual is approaching end of life. It is a subjective conversation however, Federal Regulation/Law F309 is requiring Skilled Nursing Facilities to ensure that all Residents and families are aware of their Resident rights and choices when approaching end of life. When an individual enters a Skilled Nursing Facility clearly, there is a declining process. A facility could make a judgment and educate a Resident on Palliative Care and Hospice when they thought it was appropriate. However, a surveyor could review a chart or several charts checking to see if we are meeting this Federal Regulation/Law by ensuring that the Residents and/or families have been made aware by the facility of Palliative Care and Hospice as an available resource for all resident approaching end of life. The surveyor potentially makes the judgment that the facility was out of compliance and should have educated the Resident and/or families earlier on Palliative Care and Hospice as an available resource and as a consequence of not having done so, the Resident suffered actual harm. Therefore, it is much better to begin the educational process upon admission and as needed to ensure all of your Residents and families are aware of Palliative Care and Hospice as a Resident Right and alternative choice.|
|Q:||Why can’t the Admission Coordinator just explain to the Resident and/or family what Palliative Care and Hospice are? Why do we have to refer to a Hospice company just to educate?|
|A:||Because you will place your facility in a compromising position for a potential lawsuit. A conversation between a Social Worker, Admission Coordinator or other staff with a family member can and has been very misinterpreted by a family as the facility staff recommending Palliative Care and/or Hospice versus being educated. For instance, as a result of such a conversation a husband places his wife on Hospice she soon passes away. After she passes away, the husband decides that she didn’t have to pass away and in fact; it was the Social Worker who told him his wife should be on Hospice. His wife has passed and now he has filed a law suit against the facility because the Social Worker recommended Hospice and killed his wife. We never want there to be any confusion that it was anyone else’s choice other than the Resident and/or the family. It is best to keep it safe by making sure that all education on Palliative Care and/or Hospice is done by a trained Consultant/ Liaison. This will eliminate or minimize lawsuits, confusion or muddy waters. The facility will have peace of mind knowing that the educational/awareness process was handled the best way possible and that in the end, it was the Resident and/or family choice.|
|Q:||The Federal Law doesn’t tell us we have to do it this way. Who says we have to do it this way?|
|A:||True. Federal Law/OBRA don’t really dictate to you how to do anything. They simply require that you MUST do it. It is my suggestion to follow these guidelines. As a working Administrator, and your health care peer, I have given much time and consideration in creating a protocol for my own use and I am sharing this information should anyone wish to utilize it. I feel that this is the best option to create a win/win for everyone. I strongly feel that it is the right thing to do. I applaud these new revisions focusing on approaching end of life. As you are all aware, the conversation of Palliative Care and Hospice is difficult to almost impossible to have with Residents and/or families. This is the perfect opportunity to educate Residents and/or families on Palliative Care and Hospice as an available resource.|
|Q:||The actual F155, F 309 and F322 regulatory language has stayed the same but the Surveyor Interpretive Guidelines is what has been updated so why all the concern and change?|
|A:||Because we have recently learned and been told that now the Surveyor interpretive Guidelines are to be followed just as much as the actual regulation. The actual regulatory language itself is usually one to three sentences. It is the guidelines that are much longer sometimes 40 plus pages. We must now treat them the same as the actual regulation which is now the entire book of OBRA.|
|Q:|| Why are you doing this Palliative Care and Hospice Initiative?
|A:||I feel I have this website and a small voice and I’ve decided to use it in a positive way and do the right thing. As an Administrator, I often see Residents who should be on Palliative Care or Hospice. I feel strongly that it is a service and choice that Resident’s and families aren’t aware of in the way that they should be. To choose to not utilize Palliative Care or Hospice is very different than not using it because you were not aware of it or you knew it existed but had the wrong understanding of what it was therefore, didn’t use it. This regulatory change also eliminates other bias recommendations. It is very common for Physicians to personally not believe in Palliative Care or Hospice. Unfortunately, they use this bias is making a recommendation based on their own personal beliefs rather than determining appropriateness and recognizing the importance of the Resident and/or family choice. Physicians aren’t perfect. The Physician advises the Resident and/or family not to utilize Palliative Care and/or Hospice but rather “comfort care” and the Resident passes away within days of this conversation. The families then become confused because it would seem at that point that maybe their loved one should have been on Palliative Care or Hospice. Our society in general is severely lacking in the education and understanding of Palliative Care and Hospice and what it really is. As a consequence, it’s a wonderful optional service that doesn’t get utilized because of a lack of true understanding. Death is a big event for the one dying and their loved ones. Everyone should be aware of Palliative Care and Hospice as an available resource. These regulatory revisions requiring facilities to make sure that all of our Residents and/or families are very clear and aware of Palliative Care and Hospice as a resource opens up the channels of communication so that we can educate them. Ultimately, our residents and their families will have the best death experience possible rather than a traumatic event. It’s the perfect opportunity to do something that is right. I’m sure this change was intended to do just that. I’m very excited about it.|
|Q:||How does this new regulatory update affect the Resident in the severe to late stages of Dementia?|
|A:||HUGE!!!!!!! We have all been working to reduce or better yet eliminate the use of anti-psychotics in the elderly. The biggest focuses in our industry today are End of Life, Dementia, Tube Feeding and Anti-Psychotics. And they are all very interconnected. There have been studies providing evidence that anti-psychotics prescribed for Dementia residents are deemed an “unnecessary drug” resulting in either severe harm or even death. This collaborative effort and the extreme penalties towards the unnecessary use of anti-psychotics in the elderly, specific to the Dementia Residents are justified. Recently, chemical restraints have been added under the umbrella of “Physical Abuse”. Meaning, if it’s found that a facility and/or Physician gave an anti-psychotic to a resident and it was determined to be an “unnecessary drug” and in fact, was given for staff convenience, it would be considered Physical Abuse on both the part of the facility and the Physician. The message is loud and clear “stop giving Dementia residents anti-psychotics to treat uncontrollable behaviors. It’s harmful and deadly to them”. The benefit versus harmful effects of anti-psychotics has been an ongoing conversation with little proof of these medications providing results in the younger mentally ill population that they were originally intended for. But yet we prescribe them to the elderly with little to no proof at all of their benefit. In my search for a resolve, we have learned that we can eliminate the medications in many residents just by using gradual dose reduction and by focusing on controllable pain. We have seen much improvement but the residents that we are left with are the diagnosed Dementia residents with extreme behaviors. These particular residents exhibiting these extreme and seemingly insatiable behaviors are Dementia residents who are in the severe to end stages of Dementia. I discussed with Psychologists, Psychiatrist, Internal Medicine Physicians, Palliative Care/Hospice Physicians and have reviewed studies about the resident in the late to end stages of Dementia. I immediately recognized what has been in front of us all along. This Resident is in the end stages of dementia and approaching end of life. By definition, behaviors of late stage dementia are delusions, hallucinations and aggression. What if I said to you Mrs. Jones has end stage cancer? You would immediately think end of life. But would you think end of life if Mrs. Jones had end stage Dementia? No. We need to treat Dementia like the disease that it is rather than a “behavior”. We should be using Palliative Care as a tool and a treatment for this resident in providing comfort and the best Quality of Life possible when all other measures have been exhausted. The Specialists that I’ve spoken with specifically about the end stage Dementia resident have observed immediate comfort and relief when the resident is treated with Palliative Care. Dementia is a disease and like all diseases there is the moment when there is no cure but rather comfort, acceptance and quality of life.|
|Q:||What is your recommendation regarding “life sustaining treatment” forms?|
|A:||We definitely should have some “life sustaining treatment” form signed upon admission if they don’t already have one. This is really a quick, easy, safe, smart and appropriate thing to do now in meeting the requirement of these regulations. Probably in this moment the POLST (Physicians Order for Life Sustaining Treatment) form is the best. Call Med-Pass 1-800-438-8884 to order hot pink (required) POLST forms. We have been required to honor it if someone comes to us with one or if they want one. Some facilities may use it and many still don’t. Now is a good time to implement the POLST. My concern with the POLST is that we need to make sure that with every POLST there is an actual Advance Healthcare Directive. On the POLST form, it asks to name the person’s healthcare agent. If there is no healthcare agent or if the form said that there is a legal agent but there is no actual Advance Healthcare Directive paperwork to back it up, the choices that were made on the POLST form would be set in stone. A POLST form when it is completed can only be changed by the person who completed for themselves or their “healthcare agent”. Imagine you had a POLST and something happened to you that you were unable to speak for yourself and you had no “agent”. In this scenario whatever you put on your POLST would stand and legally no one could change it. At the same time the persons wishes would be quite clear and only in certain circumstances could the “agent” change it. But there are those few circumstances when it would apply. So we should make sure that all POLST have Advance Healthcare Directives completed. This way, it provides the Resident/individual and/or agent to make decisions on their behalf. Both scenarios directly or indirectly keep the Resident’s choices and wishes at the forefront as it should be. This is the point of it all.|