California CapitolWeek 9/8/00
End of life Health Care issues, Legislature wrap-up
Facing death . . . it is a personal and sensitive issue. We hope to shed some light on understanding the process by looking at end of life, healthcare options.
(( Jack )) In this special edition, we will have a sneak preview of a national program that looks at death and dying It is by Bill Moyers and it is called “On our Own Terms”
(Melissa) And some experts will join us to help us sort through what services are available, affordable, and easiest on loved ones.
(Jack) But first . . . let’s take care of some legislative business. With the dust settled from last week’s end of session, hundreds of bills await the Governor’s signature. Governor Davis has signed legislation providing relief for San Diego ratepayers. The new law calls for immediate rate cuts for San Diego residents. It also streamlines the review process for building new plants. California has not opened a new power plant in ten years. The governor has not decided on on a third measure that would use 150 million of taxpayer money to reimburse utility customers and bail out San Diego Gas and Electric.
(( Melissa )) The Governor says it is a golden goose that should be left alone . . . we’re talking about taxing internet sales. Still the legislature has sent him an internet tax bill. That bill would require online companies with a physical presence and base in California to charge sales tax when there’s a point . . . . click . . . and purchase. Opponents say it could create a hostile environment for companies. Supporters say it’s only fair to brick and mortar businesses.
((Small retailers get hurt because they’re dutiful and they obey the law, and if you allow the large retailers that have dot come subsidiaries to evade the law, that’s a disadvantage to small business))
((Companies are increasingly are going to go where they’re welcome. And if California creates a hostile environment, companies will leave the state again.)) Governor Davis has not formally taken a position on the measure, but in the past, he has publicly Said that he does NOT favor the idea of an internet tax.
(( Jack )) Moving on to legislation involving civil rights protection. Legislation aimed at stopping racial profiling is on the Governor’s desk. It would require training for 800 thousand California peace officers. The goal is to prevent law enforcement from pulling over motorists based solely on their skin color. Civil rights group say the new bill does not go far enough. They say it should require law enforcement to collect statistics on the race of motorists they pull over. The Governor vetoed a bill with that requirement last year but has indicated he will support this new one.
One more notable piece of legislation . . a landmark measure that protects the lives of abandoned babies. Under this proposal, parents who abandon their newborns could do so without prosecution, if they leave the babies at a local hospital. There are no accurate statistics on the number of abandoned babies each year. Experts say many babies are never found.
(( Melissa )) Finally . . . in the flurry of last minute activity, one measure did not make the final call. And it could cost California millions in federal money. The legislature failed to pass a measure that would have diverted 690 million in federal dollars to cover health care for working poor adults. That money was left unspent under California’s healthy families program . . . a program providing low-cost or free insurance to poor children. The federal government would have had to grant special approval for the expansion of coverage. California has the largest uninsured population in the nation, more than 7 million adults and children. Governor Davis says he intends to seek federal aid to expand the program. He also said he is considering paying for part of the expansion in next year’ state budget.
(( Jack )) We would like your feedback on this year’s legislative session. Was it successful? What was biggest failure? What bill would you like to see the Governor pass?
(( Melissa )) Send us an email to capitolweek dot org or drop us a line to the address on your screen.
((Jack )) On now to an issue that has affected all of us in one way or another . . . death and dying .On balance, society does not deal well with that process.
(( Melissa )) It can be difficult for the terminally ill and their families to talk about details like last wishes and financial matters. But hospice care workers say by taking care of these matters sooner, the final days can be more bearable. One family shared their choice to spend the final days at home. They hope their story will help others.
REPORT
Beki Gray, Nurse & Hospice Care Worker: People always say to me, “Gee, I wish we had known about that sooner.
Nurse and Hospice Care Worker Beki Gray comforts… …And provides care at home for terminally ill patients.
Beki Gray, Nurse & Hospice Care Worker: The hospital is really aggressive, and you know they want to save life at any cost and preserve that person breathing, but what we’re trying to do is preserve their comfort.
Delphine Ledoux, Terminally Ill: It’s very nice to be home.
Hospice care allows Delphine to spend the end of her life in the home she raised nine children in.
Delphine Ledoux, Receives Hospice Care: I like the waterfalls, and I can’t get to the waterfalls anymore, so they brought a waterfall to me. I didn’t want to lose the Christmas lights, so they said, “All right, we’ll take the tree down and we’ll put the lights up,” so we have a different interior decoration.
Hospice Nurses like Becky answer medical questions, help with medication, and remain on call 24 hours a day.
Peggy Ledoux, Delphine’s Daughter: You can call them if there is a problem. Sometimes there is a problem.
Delphine’s daughter, Peggy, says that the medical care that eases here mother’s pain at home has allowed the family to focus on quality time together.
Peggy Ledoux, Delphine’s Daughter: The time has been companion time, and I have particularly appreciated that.
Delphine’s husband of 60 years cherishes this time too. He is helping to catalog the poetry his wife has written and together they reflect on cards and letters in their love book… …The grandchildren, as part of the hospice grief counseling, have made cards and a timeline of their grandmother’s life…
…Delphine says she cherishes this outpouring of love, visitors, and even the food.
Delphine Ledoux, Terminally Ill: If I decide I’d like something to eat special, I get it.
But what truly touches her heart now, and makes facing her cancer and death bearable, is knowing that not one second of these final days has been wasted.
Delphine Ledoux, Terminally Ill: When you know when you’re going, you have packing time, so you’re lucky. You’re not taken in the middle of everything not done.
For her family, the choice was to do so at home.
Larry Ledoux, Delphine’s Husband: I wouldn’t like it if she wasn’t home.
Delphine Ledoux, Terminally Ill: I hate to leave it.
END REPORT
DISCUSSION PT. 1
(( Melissa )) We should point out that Medicare covers hospice care in 60 to 90 day periods up to six months. Hospice care generally does not assist in cases where patients are on respirators.
( Jack )) Joining us now to discuss more on dying with dignity and end of care issues are: Former nurse and current Assemblywoman Helen Thomson of Davis. . . The Director of Chaplain Services at North Bay Medical Center in Fairfield, Elaine Lehr, And Doctor Kenneth Stemmle. He is an internist and also medical director at the Snowline Hospice In Cameron Park.
Jack: Helen, let me start with you. You’re background is in nursing as well?
Helen: Uh-huh. Yes.
Jack: As a culture, why don’t we deal with this better?
Helen: Oh my, well, I think that for those of us who serve in the healing arts, it’s been very difficult to overcome the issues of high-tech and touch and to be able to—
Jack: We don’t even want to think about the end of life. We’re working so hard to try and preserve it.
Helen: That’s true.
Jack: And maybe if we did think more about the end of life, we’d probably make better decisions.
Helen: Well, like anything that you would plan for, I think that that’s the case, but I think that it often comes as a surprise to people. Death is not something we talk about in our culture, and it’s not something we advertise or talk about positively. It’s always a defeat or a failure, a loss, an inability to cure.
Melissa: Elaine, you have a passion. You have been working on the hospice side and on the hospice care side as well. What’s your thoughts on this matter?
Elaine: Well, interestingly enough, I listened to the story, and the patient’s observation about being able to pack, about being able to get along with her process by packing for it and getting ready for it. You know, we don’t celebrate death like we celebrate birth.
Melissa: It doesn’t seem like an event that we want to celebrate though.
Elaine: Well, “celebrate” may be the wrong word around death, but we need to honor it and give it the quality we do of any other experience in our life. I mean, it’s absolutely the final, most important experience we’ll all go through.
Jack: What do we want, Doctor Stemmle, when we get to that point? Do we want some control? Do we want some dignity? What do we fear? Are we afraid of being alone, misunderstood, and in pain?
Kenneth: I think that there are studies that show we want symptom control. I think that first and foremost what people are afraid of is that they’ll be in pain, and secondly, we don’t want to be alone.
Jack: We have the tools to deal with pain?
Kenneth: We have some tools to deal with pain, and I think they’re improving everyday. I think that pain has become an important focus of medical care, certainly in hospitals, within the last couple of years, and I think that palliative care units and hospices are doing a much better job of taking care of pain, perhaps than they were a decade ago.
Jack: Elaine, does it come down to control?
Elaine: Control is an issue, but—
Jack: When you deal with cases, do you try to give a sense of control?
Elaine: As much choice as they can make about whatever they can make choices about we try to put back in their possession. It’s very difficult for a patient to give it all up. The other thing about pain is that it’s not just physical pain we’re dealing with. There’s the emotional pain. This person, after all, is losing everybody. Everybody else is only losing one person. The other piece is the spiritual pain. We all have that kind of existential pain that comes with the dying process.
Melissa: Helen, you’ve tried to tackle some of the physical pain with legislation, and let’s talk a little bit. There are some differences between hospice care and an ER where there are heroic, life-saving measures. Is there sometimes hesitation to give the extra medication to those with terminal illnesses? I know there is sometimes fear of lawsuits. Are we hesitant to give as much pain medication as we can?
Helen: We’ve made it very difficult for physicians to address pain. We’ve put a lot of barriers in their way with out triplicate procedures and how many numbers of triplicate prescriptions a physician can fill each time, and the number that he can get from the Department of Justice per hundred. In fact, that’s a bill we tried to deal with this session. It’s on the Governor’s desk, AB2015, so if you’re a supporter of that, please write the governor, but the other piece of all this is the inadequacy that there has been in medical school curriculum and end of life care, and I like to say that while there is a lot of pain associated with terminal illnesses, the physical pain you have to conquer—
Melissa: Before you can deal with the other issues.
Helen: --other kinds of pain, and what our bill did is try to get into the medical school curriculum is to just mandate that every medical school in California will have a curriculum that addresses pain management and end of life care.
Jack: Does that mean then that the physician won’t be able to give the patient pain medication so that the patient will be able to make better decisions, or is there a fear that that would cloud the decision making process? It seems like the whole key to this is to allow the person that’s going through this to have some control.
Kenneth: I think that’s one of the keys. I think we need to back up a little bit. I think that the important thing that we’re talking about is the Moyer special that’ll be on, and I think the educational piece, the piece that puts this topic in the mainstream conversation, is, perhaps, at least as important as the element as the elements of pain control and the elements of symptom management. We have a whole cultural process that we need to start.
Jack: So that we, as people who will go through this, can ask the right questions?
Kenneth: So that we can ask the right questions, so that we can recognize, particularly as physicians, what our role is in end of life care.
Melissa: Ken, how difficult is it to have that conversation with patients facing terminal illness, and as a patient, are there questions that we need to ask when we’re given that diagnosis? I can only imagine. You’re probably just stunned. You don’t even think about asking about options.
Kenneth: I think it’s very difficult for patients, particularly coming from a youth oriented culture, from a culture that denies death in some ways. I think that most patients are too stunned and shocked to ask even the critical questions: What will my illness do to me? How long do I have? It’s very important, I think, for the physician to take the lead and make sure that there are family members present. It’s a very difficult situation both for patient and physician.
END DISCUSSION PT. 1
(( Melissa )) We’ll continue this discussion. But first, as promised, a sneak peek at a national program that is Opening up the dialogue on death and dying.
It is a Bill Moyers special that will air nationally this weekend on PBS stations. It is called “On Our Terms”.
BILL MOYERS PREVIEW
(( Melissa )) So what do doctors and hospice workers suggest we start to talk about? First, talk to your family about your wishes, such as resorting to heroic life-saving measures. Find out what services are available. If faced with a terminal diagnosis ask your doctor to explain all treatment options, their likely outcome, and possible side effects. Talk to all your doctors, especially if you have several specialists. Don’t assume each caregiver knows your wishes. And have your financial affairs in order, so the final moments can focus on other matters. The AARP has a guide for preparing for end of life issues, go to w-w-w dot a-a-r-p. o-r-g
DISCUSSION PT. 2
Jack: Elaine, this conversation eventually comes down to death with dignity, the right to die. The state of Oregon has an initiative law that’s on the books, and I assume that it’s still there. The issue comes up in the legislature occasionally. Are we ever going to see anything like that in California and should we?
Elaine: You’re opening a can of worms. I want to borrow from Doctor Stemmle because he used a phrase this morning that I think I want to keep in my repertoire to use with families, and that’s called “hastening death.” I’ve had patients ask me about these issues and the fact that they hurried toward it for some reason, and to me that gets back to some of that pain that’s indescribable. It’s not just the physical piece. It’s the—
Jack: Spiritual piece?
Elaine: Spiritual and emotional isolation that these patients sometimes feel. They have no place to go. The pain can become unbearable. It can be physical; it can be all of that, so since we don’t do that well, they look for ways out. I would if I were that patient. I would want a way out of what hurts so deeply.
Melissa: Elaine, this morning you mentioned your concern that the law was well written and crafted in a certain way to provide some protection. Helen, there was measure that was in the legislature that failed this year. Is that something that you think will come up again?
Helen: Oh, I think that it will always come up again, and as long as we’re talking about death and how to make death comfortable, it will always be an issue for us. It is a very difficult issue in the legislature as you can well imagine. For example, all of the disability groups oppose the legislation, wondering who would be the first to call upon “hastened death.” I personally struggle with that issue because I feel very strongly that one should be able to be in control of how you want the end of your life to be, but I also think that if we did so many of the other things that we need to do first that there would be less pressure and less call for “hastening death.”
Jack: Well, it exists in Oregon. I don’t know what the experience is in Oregon, but I don’t see headlines that indicate that large numbers of people are using it. Does it become in this environment just one more option that you have in addition to the other options, the palliative care that is pain management and the spiritual help as well?
Kenneth: To my mind, if it is an option, it certainly is the option of last resort. I think the important conversation about “hastened death” is a little bit like the conversation around abortion. The important question is how do you keep people from ending up in those straits where they see that as an option at all? And I agree. I think we’re talking about relieving discomfort. Spiritual discomfort, emotional discomfort, psychological discomfort—
Jack: So we never get to that point?
Kenneth: So we never get to that point.
Melissa: Doctor Stemmle, when we look at all the options—pain management is one of them—do you think if we maybe tackled some of the issues in terms of comfort and pain management that the assisted suicide less prevalent? And in terms of the physicians, is there more of a move toward palliative or hospice comfort care rather than these heroic, life-saving measures that you guys as doctors are trained to provide.
Kenneth: I think there, increasingly, is comfort with palliative care. Palliative care has become an important issue in mainstream medicine in the last three or four years.
Melissa: More and more insurance plans are covering that now as well. Elaine, how are families dealing with this? Is it a case sometimes where one family member wants one thing and someone else wants something else? I guess that doesn’t provide a lot of peace in those final moments.
Elaine: It doesn’t provide a lot of peace, and the ideal situation is when we have a patient who is dying is to have them in a situation for a length of time where we can work with families and help them get to some resolution or some agreement on what the treatment should be.
Melissa: So to try to address these important decisions early on and not in a crisis?
Elaine: Early on, and I’ve always preached—I can say that in my business, you know—that we do this out in the caring environments that we’re all parts of, the community that we’re a part of, the family that we’re a part. If we’re part of a faith group, to deal with these kinds of issues of ultimate kinds of decisions.
Jack: Yeah, but ultimately is it our responsibility?
Helen: I was going to say that another way to deal with it is to have an advanced directive, and I think that all patients ought to—
Jack: Okay, what is an advanced directive?
Helen: An advanced directive is your instructions to your physician and your family about how you want to be dealt with at the end of your life?
Melissa: How does the legislature stand on this issue today, Helen?
Helen: Well, the legislature has supported advanced directives, and there is law in California that allow them and encourages them, and there is a department in the health department that an assistance bureau for the elderly to make sure that they can get help with advanced directives.
Melissa: Doctor Stemmle, where do you see this heading?
Kenneth: Ideally where I see this heading is increased public awareness. Eventually, public consensus around the critical pieces of palliative care and end-of-life-care, and, eventually, public policy.
(( Jack ))
Thank you all for joining us.
END OF DISCUSSION PT. 2
(( Melissa )) Don’t forgot to check your local listing for PBS airtimes of Bill Moyers “On Our own Terms.” You can also log onto our station website for more information on that program at kvie dot org.
(( Jack )) Time now for some viewer mail from last week’s discussion on California’s increasing electric rates. Darrell offers this suggestion,
“If more plants used co-generation to produce both steam and electricity this should increase supply and lower rates.”
((Melissa )) But Alma has a different idea. She writes:
“If we could all make due with a little less and inconvenience ourselves a little more, perhaps the bottom of the basket will last us a little longer.”
We thank you for your comments.
(( Jack )) Next week, a Special Edition of California Capitolweek. We take a look at teen sexuality. Why are our teenagers having kids of their own? And find out what programs are in place to slow down California’s rising Teen Pregnancy rate? That is program for this week. I’m Melissa Crowley. And I’m Jack Kavanagh. We leave you with some more highlights from the Moyers PBS special On Our Own Terms. See you next time.