Planning for End of Life Care
Michael Roy, MD
7 out of 10 Americans say they would prefer to die at home, yet nearly 70 percent of Americans die in a hospital, nursing home or long-term-care facility.
The care someone receives at the end of their life can be greatly impacted by planning ahead and having those difficult discussions with family members before it’s too late.
Dr. Michael Roy, Chief of Medicine at Maine Medical Center, is here with valuable information on how families can be better prepared and how that planning can help patients and families.
Dr. Michael Roy (Guest): Sure, I'm happy to do so. It's really a continuum. Palliative care really should begin actually well before the hospice benefit is invoked. Medicare offers funding to support hospice care for those at the end of life but palliative care is really meant to address symptoms and does not exclude the administration of other disease directed care. When one reaches a point, however, when one is near death, hospice care then becomes very appropriate and it’s a combination of palliative care, spiritual care, all sorts of support from the family and the patient that can occur either on a hospice per se, or could occur in the home with visiting nurses and that sort of thing.
Melanie: How do you begin the discussion? It is everybody's biggest concern is how do you ask your loved one what they would like and if people are someone who doesn't like to talk about that sort of thing, how does that discussion begin?
Dr. Roy: Well, I think it's different for everyone. I think there comes a time that everyone's life where it becomes really, really important and really imminent but really for most of us this is something should be addressed well before that point. I'm actually a big fan of The Conversation Project which is a project that was started by people like Ellen Goodman, from The Boston Globe and Atul Gawande and others who really feel that patients and families need to be conversation ready. They actually have this really neat tool kit that they offer online for people to download to begin sort of a structured approach to preparing for these conversations and I think that's a great thing to do. The other side of it is the physician having the information they have about the patient's status medically, answering something like the surprise question which is, “Would you be surprised if this patient is dead in one year? If you answer ‘no’ to that question, then you need to start thinking about addressing these issues and sitting down with your patient.” Fortunately, Medicare had just announced that they will start paying for these conversations to occur. They will pay for these appointments with doctors so that these kinds of conversation can take place.
Melanie: If you're loved one is suffering from some sort of dementia and that's not something that you can actually discuss with them, how do you make these decisions on your own and what kinds of decisions is it, Dr. Roy, that you want these loved ones to make? Are we looking at types of funerals? Do you look at how and where they want to be? What are those decisions to be made?
Dr. Roy: You know, a lot of that is based on that kind of your long-standing relationship with that person. I mean, ideally, again, these conversations should happen well before something like dementia intervenes. That's what we keep saying over and over again. We need to push these conversations further and further upstream, if you will. Having said that, we know that there are many times when illnesses like dementia or other catastrophic illnesses intervene and those conversations are not that possible. If nothing has been explicitly discussed in the past, then I think the person who has a power of attorney in consultation with those other family members and physicians, perhaps clergy and others, might want to just think about what would be best; what would my loved one want in this circumstance? It's called substituted judgment. You just kind of make your best judgment as to what that would be.
Melanie: As far as comfort for your loved one, what would you like to see people make those decisions about where their loved one would be and also affordability because is it less expensive to care for your loved one at home? Is the stress and responsibility too much to bear? How does that all play?
Dr. Roy: Well, there certainly is a lot of stress; a lot of responsibility. So, my touchstone for this was my mom's experience. My mom died of pancreatic cancer about 3 ½ years ago. She had actually been a nurse all her life and for part of her career had work as a visiting nurse and had done home hospice and she knew exactly what she wanted. I was very lucky in this regard but even so, I saw that arranging for resources to come in to the home, getting a hospital bed, all that sort of thing really did take considerable time and effort and my parents were blessed with insurance, so we didn't have to worry too much about that. We generally encourage people to take on these responsibilities as they can. We don't want anybody to feel overwhelmed by this. We try to arrange for outside help from visiting nurses, from home hospice, that sort of thing. But oftentimes, patients can't handle these things and that's where other options like a formal hospice setting can come into play. Unfortunately, the decision to use hospice, to invoke the Medicare hospice benefit, often comes way too late in the patient’s course and, in the meantime, a lot of turmoil and struggling and financial hardship can ensue until that decision is made and the patient is placed in a hospice. At that point, the Medicare hospice benefit for those who qualify for Medicare, of course, that covers the care and will cover the care until their death.
Melanie: What about what would you like, Dr. Roy, to tell the listeners about advanced directives, do not resuscitate, someone who's in charge of your health care? What do you want people to know about this and what they should to do plan in advance for this?
Dr. Roy: Right. So, if you're healthy and have no medical illnesses or very few, mild problems/minimal problems, you should have, at minimum, an advanced directive because you don't know what will happen travelling or some accident of some kind. You’ll want to have some sort of document in place. You need to make sure—and this applies to all these documents. You need to make sure that copies of these documents are in the possession of your doctor, perhaps your attorney, your clergy, perhaps even a neighbor, so that people have that information at hand, if you’re not able to provide your own perspectives of what you want. There are other documents that we like to make people aware of. One of them, in particular, is called a POLST form. POLST is a national movement. It's actually recognized in most states. POLST stands for Physician Orders for Life-Sustaining Treatments. In some states, it's called POST but here in Maine, we call it POLST and this is a document that's much more detailed than advanced directive and it's meant for those who are more seriously ill, have more advanced illness and in answer to that surprise question I mentioned, the answer would be ‘no’. So, someone who is in their last year of life or they’re about to have to consider doing one of these POLST forms and, again, making sure that it's in the possession of others that would need to have that information at hand. As a matter of fact, it’s something that is often advised that it be taped to the refrigerator door. In Maine here, it's a bright, lime green form so that AMT’s coming into a home would recognize it and would respect and honor those wishes as expressed in the POLST form. It’s something that you still out with a health care professional but it's got to be signed by a physician.
Melanie: Wow, that is great information, Dr. Roy. In just the last few minutes, please give your best advice for people who are facing with a loved one this end of life care of this decisions and what you really want them to know.
Dr. Roy: What I would really like people to know is that help is available, that our medical system has not done a great job of trying to address these conversations in the past but we're getting better; that we have to do better at honoring the wishes that people express when these conversations are held and it's our expressed desire here at Maine Medical Center and at Maine Health to do just that, but it's important to have the conversation first and not only that but to perhaps revisit the decisions that were made periodically, particularly after, perhaps after a life-changing diagnosis is received or some event occurs. It's a dynamic process and one that needs to be revisited on a somewhat regular basis.
Melanie: Thank you so much. You're listening to MMC Radio. For more information, you can go to MaineMedicalCenter.org. That's MaineMedicalCenter.org. MMC.org. This is Melanie Cole. Thanks so much for listening.