Hospice: How does one Receive Hospice Care?

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Sally Smith: Welcome to Age to Age. I’m Sally Smith. Let's talk. Today, we are fortunate to have Dr. Angus Baker with us. Dr. Baker spent 30 years in private practice in the area in the practice of Hematology and Oncology Medicine and has given that up to become the medical director of Hospice of Charleston. Angus, thank you so much for being with us today.

Dr: Angus Baker: Thanks Sally. I'm glad to be here.

Sally Smith: We’re learning a lot about hospice and I’m fascinated to see how much broader hospice is than what I had understood as a much smaller situation that dealt with the very limited amount of patients with very strict criteria. I found out that it's not true. It’s a much, much bigger umbrella than I have ever dreamed, and very wonderfully so. Practically how does one get hospice care?

Dr: Angus Baker: Well, people who need hospice care normally are near the end of the life or near enough the end of the life, expected life expectancy to being under the care of a physician who’s dealing with people with serious diseases. And essentially all of those physicians should and probably do know that the there are hospices available and hospice care is available and can advise the patients and their families about referring to appropriate hospice agency.

Sally Smith: Let me ask you this, could someone just call up hospice out of telephone book and say, "I have a family member that’s got a problem." At that point, would the hospice’s representative say, "Well you need to get your doctor to recommend us “.

Dr. Angus Baker: What probably would happen is the hospice would make what might be called an 'information visit' and come give the patient and the family members in their home information about what hospice implies and what it includes and explore a bit about whether the patient and family members think they are all appropriate for it . They would not however admit the patient to hospice without specific referral or written approval of the referring physician.

Sally Smith: So that’s a hard criteria, the paper work criteria?

Dr. Angus Baker: Right.

Sally Smith: So there is an interview process with the patient and the family, is this done together or separately?

Dr. Angus Baker: It can be. You know it may also be the physician would bring it up and or the patient bring it up with his physician and they would agree and inferring with each other that hospice care would be what they want. But if somebody is looking for information and calling hospice without their physician having already participated in that discussion, then they would get information. And then the patient or the hospice either one of both could then bring it up with the physician.

Sally Smith: So the paper work that is needed to enter hospice care is a direct referral from a doctor and two physicians saying that it's likely the patient would not survive six months. Is there other paper work involved?

Dr. Angus Baker: The referring doctor is one of those physicians. Another one is usually the hospice physician. So you don't have to have two ahead of time.

Sally Smith: Oh, a hospice physician would work. Ok. Is there other paper work? Are there other agreements, the family or the patient.

Dr. Angus Baker: Sure, there probably are some Medicare regulations, if it’s a Medicare patient or private insurance if not Medicare that have to be signed. Most of those are fairly routine. If somebody has a reasonable expectation that they might not live more than six months with an illness that both physicians agree upon with that prognosis, then they are eligible for it. The paper work past that point becomes relatively routine.

Sally Smith: So they do not require an end of life say, I forgot the name of the legal document where you say, you don’t want to be resuscitated and you don’t want to be on life support and a living will or enduring power of attorney or health care issues, those documents are not necessary.

Dr. Angus Baker:  These issues are most certainly will be brought up and discussed and decided upon by the patient within the family. However, there’s even a specific Medicare regulation that the hospice is not allowed to decline to admit the patient just because they did not have or do not choose or do not resuscitate order at this time. That cannot be used as reason not to admit the patient at the hospice, if they otherwise are appropriate .

Sally Smith: I had always understood that if you were in hospice, that was one of the requirements that you not be wanting to use extra unusual measures at the end. It was more an idea that we’re letting nature take its course, we'll do the best we can. But we’re not going to resuscitate someone if they try to die on us. Am I wrong in this?

Dr. Angus Baker:  That’s a common assumption but it’s not required. In fact, we are required not to require that from patients and their families. Patients who think it very appropriate in being their best interest to have them resuscitate and/or one aggressive specific disease therapies not working, then we would certainly bring it up with the patient's family.

We'll point out to them that it’s not working. If it's not working, it's probably hurting in one or several ways. Then we would encourage them to choose for themselves but it is not required. And many doctors don't know that when emergency rooms know that when a patient comes in that’s already on hospice, so they all must be a DNR. For the hospice, that does not have to be true and patients still have the autonomy and their families do.

Sally Smith: So would that mean that if you were on hospice and you did not have a 'do not resuscitate' order, would the hospice nurse legally be required to try to resuscitate you?

Dr. Angus Baker: And/or call EMS and transport you to an emergency room.

Sally Smith: So the action would be taken. So, it needs to be legal or it does not hold any real clout.

Dr. Angus Baker: Correct, it has to be decided upon and should be written.

Sally Smith: So you mentioned in one point in our discussion that many more people are in their home than in institutions of any kind or assisted living homes. What would be that ratio be, about 90% or 60%?

Dr. Angus Baker: I’ve figured it's about 90%. Maybe 10 % of patients need inpatient care for some reason. It could be an inpatient at the hospital, for hospital treatable complication or inpatient hospice center or in a nursing home.

Sally Smith: Given that, what does the family of this patient have to commit to the hospice? Is the family asked to spend so many hours a day with the patient? Are there any requirements that are fairly specific for the family, for the caregiver of this terminally-ill patient?

Dr. Angus Baker: Normally, for a patient to be dealing with end of life care issues, then certainly they need to have somebody with them most, if not all the time. So most hospice patients, one of the first things that we look for, is there a family caregiver in the home that will be responsible? If they’re not there, then they arrange for someone else to be there or pay for someone to be there, etc.

So the family members, the key members of the team, the hospice team, the patient and the family members are key products of our team. And certainly a responsible adult person taking care of the patient or being in communication with them and watching them and being with them is normally needed and required.

There are exceptions that. We have some people who are doing quite well enough so that they can take care of themselves and get to a telephone if they need help. So there are exceptions to that rule, but usually we’re looking for a family member to be pretty much available in the home.

Sally Smith: And would that also, as part of hospice’s support and care for the whole family and the patient, would they provide some sort of a moment when the caregiver could go out for a short period of time? Is that something that’s allowed or does the caregiver pretty much need to be in the house 24 hours a day?

Dr. Angus Baker: Temporary going out is often provided by the nurse or the home health aid is they come to give the bath to the patient. They going to be there for an hour or two, someone needs to go, run some errands that’s a good thing.

Also there's a Medicare requirement that all hospices have to provide for all hospice patients restbed care. which from time to time or for usually a five-day period to arrange for them to be in an inpatient facility, in a hospital or nursing home or in their hospice inpatients center, for five days when the caregivers need to be out of town or have an operation or not be available themselves.

Sally Smith: Interesting. I know in reading the literature it was fascinating that it was not just palliative care for the patient and comfort but there were so many other issues. But also, it was very much for the family. The whole package of the support of the patient in the family and how that whole dynamic worked, which I thought was very balanced and beautiful way to approach it because they both are so interdependent.

Another thing, are there any legal papers at the end of a hospice care? In other words, someone just passes away and would a family then just sort of terminate with hospice and maybe fill out a questionnaire of how their care was. But you don’t have to have anything else at the end. Certificate of Death, I guess.

Dr. Angus Baker: That’s provided for them. The coroners notify if the person dies at home. We participate and usually sign the death certificate. The physician's a part of it. A big requirement by Medicare and the self-expectation of all hospices is to provide what we call 'bereavement care' and that is that there are bereavement counselors and bereavement groups for families’ members groups that can meet. But a lot of contact goes on for the hospice for up to a year after the death of a family member. The hospice keeps up with the bereavement team with the family members.

Sally Smith: Well, it’s amazingly comprehensive and that I'm just so impressed that we are doing something right, looks like in our society. We’ve gone and got a handle on it. Thank you so much Angus for talking with us today about hospice.

Also, I want to thank my producer Betsy Reeves, the web administrator Sujit Kara. And I also want to thank all our listeners for joining us today. We welcome your suggestions and invite your comments on our website. This is Sally Smith, Age to Age saying goodbye. And wishing you courage and joy on your own journey. We are all connected

Announcer: If you have any questions about the services or programs offered at the Medical University of South Carolina or you'd like to schedule an appointment with one of our physicians, please call MUSC Health Connection at 1-843-792-1414.

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