What Medical Documents Do You Need for End-of-Life Care?

Many seniors do not think about the necessity for their wishes for end-of-life care to be put on paper. That is where Medical Orders for Life Sustaining Treatment (MOLST) and Do Not Resuscitate (DNR) forms come into play, to articulate your wishes when you no longer are able to. Death With Dignity Laws are in place in certain states to give people suffering from a terminal illnesses a way to gain control over the death and dying process.

Join us to learn about Medical Orders for Life Sustaining Treatment, Do Not Resuscitate forms and Death With Dignity Laws. We will be joined by our guest speakers Lauren Chartier from Premier Seniorcare of Kingston, Massachusetts and Leah Strazdes.

In this webinar we will be covering:

  • What is a MOLST form, and why should you have one?
  • How do you execute a valid Do Not Resuscitate form?
  • What is Death With Dignity, and which neighboring states have adopted these laws?

The opinions expressed in this webinar are the opinions of Attorney Brian Barreira and Lauren Chartier on the law as written as of the date of the webinar recording, April 21, 2022. The information presented in the webinar is for informational purposes only, and is not a substitute for individualized legal advice.

Webinar Transcript

Brian: I’ve opened the webinar up for people to come in. I’m Brian Barreira, I’m an elder attorney in Plymouth, Massachusetts. Today’s topic is, ‘what documents do you need for end-of-life care?’ With me is Lauren Chartier, who is a nurse with a master’s in nursing who deals with a lot of our clients who need help toward the end of their lives. Lauren, introduce yourself.

Lauren: Yep, good morning everyone as Brian said I’m Lauren Chartier, I’m a registered nurse and I’m a certified care manager and I’m the owner of premier senior care geriatric care management, so I work with elders and specialize with kind of making the best of the situation and dealing with all sorts of challenges and they very often deal with end-of-life issues. And I’ve been doing, I’ve been a nurse for you know over 35 years and been doing geriatric care management for you know 20-ish years.

Brian: So you are what we used to call a geriatric care manager.

Lauren: That’s right and that’s a very common term still a lot of people use that term but there is now an organization that’s been renamed it’s now ALCA, A-L-C-A, which stands for aging life care association.

Brian: Yes, I guess people didn’t like the word geriatric.

Lauren: Well you know, care manager was more of the issue because you could go into an assisted living facility and have home health aides that were called care managers, especially on night shift they were care managers, so it was sort of a diffusion of the definition of care manager with you know non-professionals and professionals and they wanted to kind of separate the profession out a little bit. So that’s how that happened, but a lot of people look for a geriatric care manager I think more look for a geriatric care manager because a lot of them don’t know what ALCA, aging life care association, really is, but over time maybe that will evolve.

Brian: Okay and Leah is also with us, Leah works here, Leah introduce yourself.

Leah: Hi, I’m Leah, I’m going into law school next year so I’m very excited to be here.

Brian: It’s coming closer to that it’s this year.

Leah: Yeah!

Brian: So we’re going to start with what documents are commonly done by lawyers and then move on to what documents are done more with physicians or almost exclusively with physicians. So to start with health care proxies, now this is something everybody can do there are free forms everywhere, there’s a sample of a document that Leah has put up. A health care proxy simply says, ‘if I’m not capable of handling my own healthcare issues as determined by a physician, then I want person one to take over and then optional the alternate option, person two. You sign it and date it in front of two witnesses, the only rule about the witnesses is they cannot be the two people you’ve appointed up above and then once you do this, you know the forms I should say the forms that some of the forms have the people being who were appointed sign it. It’s not a requirement of the law, it’s an optional thing, it’s so that you deliver it to them and they know about it. And that leads me to the central point I wanted to make here is, it does you no good to sign this document and then put it in your safe deposit box. You have to make copies and distribute it, maybe keep a copy in your car if you’re married and your spouse gets rushed to a hospital your first instinct is going to be to get in your car and drive, so just to know you’ve got it, circulate it. A copy is as good as an original. We do this routinely, these documents routinely for people, the forms only allow you to put one alternate in whereas many of our clients want to put more than one alternate, so we can do that. The HIPAA authorization is another document, this is not necessary for end-of-life care but a HIPAA authorization gives other people access to medical information and they can be advocates. Now we’ve done some health care proxies, excuse me, HIPAA authorizations where we’ve named Lauren when Lauren was their care manager or whatever we want to call you Lauren…
Yeah your aging life care professional. So, it’s the people who have access to information and you know if you have a nurse or a doctor or someone in the medical field in your family often it’s a good idea to add them to the HIPAA authorization because the family might be relying on them as the interpreter for a lot of the medical information. So these are the two basic documents that are done in law offices. The other documents that are done regarding what you want toward the end of life, before we slide over to the documents that are done by doctors, a lot of lawyers do something called a living will. It’s not a living trust, a lot of people confuse this, a living will says, ‘I want to die with dignity’, but they don’t get into specifics. They’re not all that enforceable they just give you, they give people a sense of what you want or don’t want toward the end of life, but from what I’ve read they’re not even, they’re barely read by hospitals and doctors and nurses. A lot of these things just are not worth the paper they’re written on because they’re not enforceable and they’re not looked at. So the documents that are enforceable are the ones Lauren is gonna talk about now, go ahead Lauren.

Lauren: Thanks Brian, I wanted to make one comment about the health care proxy since we’re getting into the nursing home setting I think it’s important to explain to people that there’s a difference between a primary and an alternate and even a third choice as opposed to sharing them. I’ve had situations where people you know are choosing their adult children to be in this role and they sometimes are worried about hurting their feelings. You know this is an important decision, you need to choose the person that’s really going to, you know, act in your best interest and do the right thing and kind of understand what your needs and wishes are. So you don’t want to, you want to explain to people it should be someone who’s going to do that, you don’t have to worry about hurting another child’s feelings, it’s not about their feelings, it’s about having someone in place who’s going to act on your behalf. And there’s also, I have a concern about sharing, some people want to have two primaries rather than a primary and alternate so that they’re sharing it equally. That can be very problematic. I had a patient in nursing home and you know when it came down to simple things like IV antibiotics and stuff, one of the primary agents, they were sisters, one of them you know wanted everything done and the other one did not and a lot of her treatment got delayed just because these two sisters just couldn’t seem to agree on anything, and if it was put in a situation where there was a primary and an alternate, the primary would have been able to make these decisions and the alternate was there if it was needed but there can be issues with sharing it. I just kind of wanted to point that out.

Brian: And there are also issues I should bring up with some families, right, since you’re bringing that up is you know, they do a new one. You know, one is done somebody else goes in there and sees the parent and gets another one done. Every new one revokes the previous one and it can get into a tug of war over who is in charge and those are the cases where we sometimes need guardianship, which if we have time at the end I’ll mention.
Lauren: Yeah good point Brian. All right, so getting into a nursing home setting, the Comfort Care DNR form I think is starting to get phased out just because the MOLST form is so much better which I’ll get into later. So comfort care is basically no aggressive treatment, no resuscitation, that means no CPR if the heart and breathing stops you just keep the person comfortable and the heart and breathing stops they’re basically you know have died and resuscitation basically revives them and tries to bring them back. I think it’s really important to have these things spelled out, preferably in a MOLST form because it’s very specific and it turns your wishes into a legal document and a doctor’s order. So unlike a living will where you’re writing, you know you’re spelling out your wishes this actually puts it in order which they are required to abide by in a nursing home or hospital setting.

Brian: But they have to see the original that’s, right?

Lauren: The Comfort Care and DNR form was supposed to be the original, it was that you know blue and white form it had the red number on it. Now, the MOLST form seems to be preferred because it includes the do not resuscitate amongst a lot of other things and a copy of it is now valid. It used to require an original form which was hot pink and stood out but there’s a an issue with getting that hot pink form you know home, you know to the emergency room, back home again, you know it’s hard to transport that everywhere so now it is acceptable to use a copy of the MOLST form. But I think with the DNR form they wanted that you know original form with the code number on it and they didn’t tend to accept or honor ones that were just a copy. Do not hospitalize is a very tricky wish. Basically, that’s reserved for someone who’s really at end of life, for example a hospice patient who really is just on comfort measures. You know, if they are retaining a little bit of fluid you treat them with lasix right there in the nursing home, keep that patient comfortable. You know, being sent off to an emergency room going back and forth to the hospital is very difficult for patients that are at end of life, they’re weak they may not be cognitively intact it can be very confusing for them, tiring for them they’re dealing with people that they don’t know and the professionals are dealing with a patient that they may not know and very often they’re much better off getting the treatment they need right there in the nursing home. That’s when a do not hospitalize really is appropriate and really doing the patient a favor and I do want to point out if there’s an issue such as a patient falls out of bed and fractures their arm for example, they do override that do not hospitalize if a cast has to be put on the arm they do send the patient and override the do not hospitalize because that arm needs to be put in a cast as a comfort measure. So they’re not sent to the hospital for any life-sustaining heroic measures, they’re sent to the hospital if an injury or something requires hospital treatment to keep them comfortable. So, you know, do not hospitalize is basically, keep that patient at home or in the nursing home where they can be treated most comfortably but the healthcare professionals can decide to send to the hospital if it’s in the patient’s best interest. Do not intubate. Intubating a patient is basically inserting a breathing tube that is then hooked up to a ventilator to keep them alive. Being intubated is not a comfortable state, if the patient cannot breathe on their own because there’s some temporary issues such as pneumonia and they need the support of being intubated temporarily then it’s appropriate but to put someone on a ventilator who is clearly at the end of life is not doing them a favor that is really prolonging their life in a very uncomfortable way. On the MOLST form that question is asked and basically intubating is agreeing to have mechanical ventilation because the only reason they intubate you is because they need to assist you mechanically to breathe. So, do not intubate really should be something that you put in place at end of life for someone who would be you know being kept alive in an uncomfortable way. If someone really can’t breathe and they’re not going to be able to breathe on an ongoing basis that’s usually a time at which you keep the patient comfortable and ease them out rather than prolong them in an uncomfortable way. What is resuscitation or hospitalization intubation and what kind of treatment do they entail? So that basically summarizes you know resuscitation is basically doing compressions on the chest to keep the heart going and artificial respirations, breathing for them, which in an emergency setting it’s a person breathing for them, EMTs would then use an ambu bag and then when you get to the hospital in order to continue that that’s when you get intubated and put on a ventilator and if that’s something you don’t want done or you don’t want done for your loved one if you’re the healthcare agent it has to be indicated on the MOLST form. Non-nursing home setting. So home setting is different, in a home setting it’s especially important that these documents are where they can be seen, which is on a refrigerator, it can be you know folded in half in an envelope with emergency information written on it but in the state of Massachusetts if emergency medical personnel arrive at a home they’re required by law to do full resuscitation on a patient unless they have a MOLST form or a DNR form present. In homes where patients have home health aids coming in they’re all instructed on this the first thing they do when the EMTs arrive is to hand them that envelope with the MOLST form or the DNR form so that the EMTs have those instructions and if they are not there they will do full resuscitation. And I emphasize, Brian did point out, that these documents have to be available you can’t fill out these documents and put them in a file cabinet upstairs because it’s not going to do the EMTs any good when they get to the home, they do have to be you know available and visible on the front or the side of the refrigerator that’s the designated place for them and that’s where the emergency responders will look for them. So the MOLST form can you bring that up again Brian, can you put that where it’s visible? The MOLST, form so the initial part of the MOLST form, A is basically a do not resuscitate clause so that A clause and B clause takes the place of a do not resuscitate form because it’s right there. Basically this is a checklist and the things that we just talked about are all on here and it does say right there do not transfer to hospital unless needed for comfort. It’s important to make sure these things are all signed off appropriately. The back page is a little bit repetitive but you get into the specific things as you can see here dialysis, use dialysis, use dialysis short term only if someone goes into like renal failure suddenly they’re likely to just use dialysis they will use dialysis if you know the form is not used or it’s an emergency and they have to have it done right away. If someone’s unsure dialysis short term only is appropriate because in discussing the health status of the patient with the doctors and everything you know gives you a little bit of time to decide, well gee if this dialysis is you know not really working and there are other issues that are going to interfere with this patient being able to live and it’s interfering with the quality of life it kind of gives you time to decide whether to discontinue it or not. Brian do you want me to get into artificial nutrition and hydration?

Brian: Absolutely, absolutely.

Lauren: Artificial nutrition you know a lot of people think well of course if someone can’t eat, if they can’t swallow of course we want artificial nutrition. Artificial nutrition can be initially done like through a nasogastric tube, a tube that goes down through the nose into the stomach that’s usually a short-term thing. A long-term solution is to actually insert a tube that goes directly into a stomach and then you do tube feedings. In a younger person that has some sort of neurological condition that’s definitely appropriate they need that for life but I really want to point out that in an elderly person who has a terminal illness, some sort of gastric cancer or something, if a person gets to a point where they they can’t swallow very often their entire GI tract is affected neurologically and they get to a point where they really can’t digest their food. So, if you start tube feedings on someone that can’t not only swallow but can’t digest their food, what you’re going to cause is serious diarrhea because they can’t process it, diarrhea can result in you know sores and skin breakdown and things like that, so it’s not really a simple question of well of course we have to feed this person sometimes we really can’t process artificial nutrition so it really requires a serious conversation with the doctor about whether or not it’s appropriate to do artificial nutrition. You know, is it going to make the patient uncomfortable because they can’t process the tube feeding or will they be able to process it and their life has enough quality that they want to continue and have this type of feeding, but real important to have a conversation with the doctor about this patient’s status before making a decision like that. It’s always safe to do the short-term only thing.

Brian: Lauren, I once did a program on representing a terminally ill client and a nurse attorney was on a program with me and she said, I don’t want to miss quote her, but I thought she said that dehydration is a quote ‘good death’ unquote, do you want to comment on that?

Lauren: I do want to comment on that, that’s a good point Brian. There is sort of you know a theory amongst, a lot of are oncologists and in different health care professionals that when a patient is dying they’re on their way out they lose their appetite, they don’t feel like eating anymore because they really can’t process food anymore, they begin to lose their actual thirst and they say it’s part of the natural process of dying that the body stops requiring fluid. Some oncologists feel that the body is more comfortable when you’re really at end of life when it is in a partially dehydrated state. They say that people can almost drown in extra fluid if their body is declining to the point where it can’t process fluid. And as you know in our society it’s all about hydration, you know hydrate hydrate and people very often want to do that with patients on hospice near the end of life when they really don’t want fluids. And it’s not just thirst, it’s the body’s ability to process this fluid so, generally speaking before you’re at an end of life situation hydration is a good thing but when you get near the end of life slowly dehydrating is a natural process and if you try to force fluid into a patient who can’t process fluid they’re not going to be comfortable. It can involve you know back up into the lungs and things like that, stress on the heart and they can’t, there can be too much fluid in a patient who’s at end of life.

Brian: Okay, so I want to point out in this context that I once found a catholic health care proxy online and it said it’s against church teachings to withhold food and nutrition at the end of life, so if somebody is catholic and doesn’t feel that way they really should be addressing it because the presumption might be if the physician or hospital finds out that you’re catholic that you would want that.

Lauren: Yeah so withholding is an interesting word, Brian. Withholding to me means that you’re refusing to give something that is wanted. I mean if someone’s thirsty and they want to drink and you don’t give it to them that’s withholding. Same thing if someone’s hungry you want to provide them with food. They’re hungry and they can eat they can process it. So that withholding would be not giving it to someone who desires it and can handle it. I think you know if someone’s really at end of life and they can’t swallow and they’re not thirsty, by not giving them fluids you’re going along with what they want, you’re not withholding it, you’re just not forcing them.
Brian: We need to know what they want in order to you know, so if there’s a tie and nobody knows, there could be a presumption that they would want it.

Lauren: Right, right.

Brian: So I’m just saying people need to address it you know?

Lauren: Yeah, yes.

Brian: And the family needs to really be ready for it because once a feeding tube goes in it doesn’t necessarily come out. I mean I was once involved in a case where a man in a nursing home had a feeding tube and the ethics committee voted not to take it out, then they voted not to put anything in it anymore which was a strange, strange choice.

Lauren: That is, yeah I’ve never seen that situation that is a strange choice but it was probably, you know, it was determined by one committee to keep the feeding tube in but if the health professionals thought, well this is going to be an issue, there’s going to be reflux and all these other problems, then they’d be required to act in the patient’s best interest to keep them comfortable and not cause problems by giving them fluids or nutrition that they can’t handle.

Brian: Okay, all right so we had a question and I want to address a couple of quick things on this MOLST form before we turn it over to Leah to tell us about other state’s laws but the question was, ‘what is did not discuss?’ I mean there are, there might be issues that weren’t discussed with the patient so that’s you know, I mean you may not discuss dialysis with somebody because it just didn’t seem like an issue to deal with at that point. The other thing is if somebody does not have a health care proxy and there’s no official decision maker, then you might need a guardianship and a guardian probably does not have the power to sign this kind of document. Guardianship has layers to it, and you need to get special permission from the probate court to sign this, to enter into this sort of a form. Okay so to to end this “fun” topic, I had a client recently who asked, you know she wants to be in charge of the end of her life, but it doesn’t appear like there’s anything you can do. Now with dialysis you can refuse it, you can go on to hospice and hospice can maybe give you extra morphine and accelerate things for you toward the end of your life. There aren’t a lot of options in Massachusetts. There are other states that have laws that they don’t want us to call assisted suicide, but they’re known as death with dignity laws and we got a couple in New England and Leah did a little digging on that to find out to tell us you know what these are in Vermont and Maine, go ahead.

Leah: So in Maine it’s called, ‘Maine Death With Dignity Act’ and that was passed in 2019, and then Vermont has the, ‘Patient Choice at End-of-Life Act’ which was passed in 2013. These do not like to be called assisted suicide laws they prefer physician-assisted death and dying, aid in dying or physician aid in dying. The medication that’s administered, there’s no prescription drug that’s specified in either state’s laws but Maine does say that they use compounded formulas like DDMA or DDMP, those are drugs that contain morphine and they just kind of hasten the dying process. As far as eligibility goes, it’s only for residents of the state, aged 18 plus, suffering from a terminal disease, they have to be competent and capable, they have to voluntarily express the wish to hasten death with medication and they have to be able to self-administer these medications, since the doctors are not actually the ones administering the medications into the patient. As far as residency requirements, you have to have a valid driver’s license, be registered to vote in the state, own or lease property in the state or file a tax return in the state. They don’t all have to be present in order for you to be able to participate. In order to request the medication your doctor has to make a determination that you have a terminal disease, that you’re competent and that you meet the residency requirements. You have to make an initial oral request for the medication and then you have to make a written request for the medication that’s signed by two non-familiar witnesses, so it can’t be anyone who has an interest in your care. And then at least 15 days after making the initial oral request the patient has to reiterate their oral requests for medication and then at the time of the second request the physician must offer the patient the opportunity to rescind their request for medication. The physician must inform the patient of their diagnosis as well as their prognosis including their life expectancy, the potential risk of taking these medications and the probable result of taking the medication and then they have to be informed of the other options available to them including palliative, comfort care, hospice care and other pain controls. And then the patient would be referred to a second consulting physician for confirmation of the diagnosis, prognosis, life expectancy, they have to reiterate that they’re capable and competent, acting voluntarily and making an informed decision. Then the patient will be re-counseled about recommending that they notify their next of kin, the importance of having another person present when they take the medication, they have to be notified they cannot take the medication in a public place and then they have to have another opportunity to rescind their request. As far as dispensing the medication the physician will write the prescription no fewer than 48 hours after the last to occur of the following events, either the written request or the final oral request, which is the second one. If the physician is authorized to distribute the medication they will distribute it directly to the patient including ancillary medications and comfort medications like morphine. If they’re not able to distribute medications or not authorized to they’ll just deliver the prescription to a pharmacist who will then give the medication directly to the patient or an aide. And then after all that is done, the physicians must file a report with the Department of Health that includes all the oral and written requests, information about their competency, residency requirements, etc. Some people are concerned about the effect of death with dignity laws on things like life insurance or annuities or contracts and wills in both states a person and his or her beneficiaries will not be denied any benefits under life insurance policies. Maine does specify that, ‘the sale procurement or issuance of any life health or accident insurance or annuity policy or the rate of charge for any of the affirmation policies may not be conditioned upon or affected by the making or rescinding of a request for medication that that person may self-administer to end the person’s life in a humane or dignified manner’, and they reiterate that as well concerning wills contracts and other agreements. So Maine has pretty much outlined all the protections for contracts and other legal documentation.

Brian: So Lauren, if I have to take my own meds that are given, prescribed to me by the physician, how do I do that if I have ALS and I don’t have control of my body.

Lauren: I was gonna say it’s very common that when someone is close to the end of their life they’re not able to do that. I mean we’re also dealing with people that may have you know stage four Alzheimer’s disease on top of you know physical conditions and they’re not able to do that so that’s a huge problem.

Leah: Yeah, I’ve noticed that in a lot of these laws that they have that issue come up.

Lauren: -and when you think about it, Massachusetts doesn’t have this physician-assisted thing, they have hospice but you know family members can be instructed by the hospice nurses to administer sublingual roxanol, which is morphine that is just basically squirted with a syringe under the tongue it’s very simple and easy to do you know if there’s a nurse, case manager or VNA involved they can pre-fill the syringes to the right dose and there are you know hospice aids, hospice home health aides that are trained by hospice to administer, well they can actually, it’s sort of pre-administered because it’s pre-filled by a nurse or a family member and then they can you know give the syringe to the patient and this assist them in giving it, but it sounds to me like it’s almost easier in Massachusetts than in some of the states that have all these rules and regulations because they’re so regulated that they’re making it difficult.

Brian: I have this vague memory of Dr. Kevorkian back maybe 20 years ago having rigged some machine so some man with ALS could administer the dose to himself, but it doesn’t seem like these laws take that and allow that. All right, I think this has been a “fun” topic, not really, but thank you Lauren for joining us today, we appreciate it.

Lauren: You’re very welcome, always a pleasure Brian my pleasure.

Brian: Take care everybody bye.

Lauren: Thanks everyone, bye.

Leah: Bye.