Two Bills To Change Health Care Delivery
The campaign to expand palliative care is not only being carried out by patients and their families throughout the country, but by advocates working on the legislative front in Washington DC. The Patient Quality of Life Coalition, which the Partnership for Palliative Care is a part of, is heading to the Hill next week to let lawmakers know that they should support two major bills that would increase access to palliative care. I spoke with Dick Woodruff and Keysha Brooks–Coley, who are federal relations staffers at Coalition member ACS CAN (American Cancer Society Cancer Action Network) about their efforts to get this legislation passed.
Q. What exactly is the Patient Coalition Quality of Life is and who is a part of it?
Dick Woodruff: The Patient Quality of Life Coalition was formed to advance the interest of patients and families facing serious illness and it includes about 20 or so non-governmental, mostly non-profit organizations that are dedicated to improving the quality of care and quality of life for people with serious illness. In addition to ACS CAN, which is a patient-based organization, it includes researchers in the field, caregiver organizations, as well as the professional organizations around hospice and palliative medicine, social workers, some oncologists, oncology nurses, and hospitals. So it is a whole range of different organizations, but they all have as part of their mission a desire to improve the quality of life for patients who are undergoing treatment and who have serious illnesses.
Q. There are different groups that advocate for folks with different types of illnesses as part of the Coalition. Can you talk about some of the different types of member groups?
Dick Woodruff: Well, for instance the American Heart Association is a member and The Lung Cancer Alliance, which focuses specifically on Lung Cancer, is a member.
Q. I think it’s interesting that the American Heart Association just came out with a new study around palliative care, and that groups that have been advocating for patients for a long time are starting to see palliative care as an important part of the process of treatment and care. So there are two pieces of legislation right now that the Patient of Quality of Life Coalition is promoting; I would love for you to share a little bit about those two pieces and what they are.
Keysha Brooks-Coley: There are two bills that we are working on. The first is the Palliative Care Hospice Education and Training Act (PCHETA) and the second bill is the Patient Center Quality Care for Life Act (PCQCLA). Both of the bills focus on 3 main areas that have been identified from a public policy standpoint that need to be addressed to make sure that patients have better access to palliative care.
The first priority area is around making sure that more health providers–doctors, nurses, social workers, nursing assistants–are trained in the core competencies of palliative care, so doctors have an understanding of how to provide coordinated care, making sure that doctors are trained in the medical sub-specialty of palliative care, as well as nurses, nursing assistants, and social workers as well. And the bills do that by providing some funding that would go to medical schools to train doctors, and also a grant program where funding would go to the Health Resources and Services Administration to provide grants that would actually help to train other health providers.
The second main area that is important and is included in the bills is around research and making sure that there is a stronger federal investment in actual research dollars that is provided for researchers looking at palliative care, symptom management, doctor/patient shared decision making; all areas that we know are very important and research has not been as much of a priority and a lot of people think they really should be. Less than 1% of National Institute of Health’s Budget has really focused on research in those areas, so the language in the bill would require the National Institute of Health Director to try to really move forward and provide greater funding in those research areas.
And the third area that the bills touch on, that really is another key priority, is around educating people about even what palliative care is. We’ve done polling work in polling the public in their understanding of what palliative care is and found out that 70% of people, when asked if they even know what the term palliative care is, aren’t familiar with what it is; they aren’t familiar with how it can be a way to really provide better care, and how as a patient they can receive better coordinated care that’s addressing their symptoms as they are going through the beginning of their diagnosis through their treatment and onward. The bills do that by allowing for a grant program that would be done by the Center for Disease Control and actually doing an education awareness campaign in educating people about what palliative care is, so they know how to ask for this type of care.
And so those bills are pending in Congress, in both the House and the Senate, and we have over 200 co-sponsors between the bills in total of members who are actually supporting them in both the House and the Senate. So we are pleased with the support we have been able to get and we are working to get more co-sponsors as well.
Q. And as a patient advocate, how do you see these bills improving the day-to-day lives of both patients with chronic illness and their caregivers?
Dick Woodruff: Today about 90% of public hospitals, large hospitals, have palliative care teams on staff and they are ready to serve patients who need that added set of services. But most of those patients often don’t know that that services are available to them and their primary doctors aren’t necessarily going to make that referral. So there is really a disconnect between the services that are available and the patients who need them.
And I’ll just give you an example: we did a briefing up at Hopkins University at the cancer center up there and they have a fabulous palliative care team staffed by a really experienced nurse practitioner. And among the other presenters at the event, there were two spouses of patients who had been treated there at Hopkins who spoke of their experience as caregivers. When their spouses were in the hospital dealing with all sorts of symptoms like anxiety and shortness of breath, they didn’t know that right there available to them was this palliative care team that could step in. Finally, after their spouses had been in the hospital for weeks, they just by happenstance learned that they could get help, and the relief was almost instantaneous. These caregiver stories just lend so much validity to the argument that the word needs to get out on how beneficial this extra set of services can be if people just know about it.
Q. What do you see as the benefit in terms of why we should allocate more money towards this? We only have a certain pot of money to provide for all of these different things, and so why do we need more funding around palliative care?
Dick Woodruff: Well, the first thing is that it’s not a lot of money. But more importantly in a broader sense, if you look at the way that the healthcare system is delivered in this country and has been for 50 years, it’s very, very expensive and the quality is not necessarily that good. There has been essentially a conundrum in healthcare: How do you improve quality without increasing cost? And even when you increase cost, how do you improve quality?
So there are a whole bunch of different studies that have been done over the last 10 or 15 years, some of which ACS was involved in sponsoring: work done up at Mount Sinai by Diane Meier and Sean Morrisson and their colleagues and elsewhere. They have shown that seriously ill patients who receive palliative care, have better quality of life; they sometimes actually live longer; it can prolong life.
But also, very importantly, it does indeed save the healthcare system money because these patients have fewer days in the ICU, which is very expensive, as you know. They experience fewer hospital readmissions. They have fewer emergencies in the night that then causes them to go to the emergency room, which is also very expensive. So, the way we look at this, this is the way to coordinate the care of the patients by treating not just them, but their caregivers and their families with this range of ways of dealing with both their symptoms and their pain and so forth. It really does have the potential to transform the healthcare system. Because these people who have these illnesses–who are not necessarily at death’s door, who are going to live 1 year, 5 years or 10 years–they are the ones who are driving healthcare costs more than anybody else. And so if we can figure out a way to manage their care, we can make life better for them, but then save the system money. So this is a really, really small investment that could have major returns over the next 25-45 years.
Q. And to take cancer patients as an example, how do you think that palliative care will help shift health care for them and how they are experiencing the healthcare system?
Dick Woodruff: Well, the idea is to make it a better experience by being better informed and better educated consumers, to have their families and caregivers brought into the discussion about what their goals are and what they expect to achieve in their treatment. And those patient conversations are often lacking today in the healthcare system. I’ll give you an example: (ASCO) American Society of Clinical Oncologists polled their members (they do this pretty often) and found that 90% of their members never learned in medical school about how to talk to a patient about a bad outcome or to have conversations necessarily about end-of-life or things like that. So, doctors (especially ones working in sub-specialties like oncology), their job is to keep you alive at all costs. And the patient’s desire is to obviously live, but the patient doesn’t also want to be killed by trying to live.
Keysha Brooks-Coley: I think that one key way to think about cancer care and palliative care is really as being integrated. Our volunteers and patients that we interact with all the time say that when you get a cancer diagnosis, you have to go through the treatment, but you also have to understand the person behind the disease. That it’s not just about going through the chemotherapy, going through the radiation and all the other things that a patient has to do if they have cancer, but the symptoms that come along with it–psychosocial issues that have to be dealt with, and understanding the family dynamics and caregiver issues that Dick mentioned as well. And what we are seeing now with palliative care being integrated into oncology care more broadly is that recognition that patients need that extra layer of supportive services that are so important for patients as they are going through their treatment, as they are going through their survivorship and onward. And that’s why we see so many palliative care programs that have really been integrated in your cancer centers across the country. And from a quality standpoint, there is a recognition from organizations such as ASCO that this is the way that cancer care can be provided better for patients.
Q. You have this beautiful advertisement campaign that you have been sharing with lawmakers to try to convince them to support particularly these two pieces of legislation. As part of these ads, the message is about seeing the person beyond the cancer treatment. And I am just wondering what that means to each of you.
Keysha Brooks-Coley: I think that our Dancer Ad really explains it the best. It’s not about the fact that the person had cancer; it’s about the fact that maybe the person was a dancer, and about being able to fulfill their dreams and go on with their life. And it’s about having those supportive services to address pain, to address psychosocial issues, to really make sure as they are going through their treatment and afterwards, that they are still the same person and they are able to do the things that want to do, and that their family wants to be able to continue to do with them, through the rest of their life. And our volunteers and the patients that we interact with tell us that: “My cancer doesn’t define me. Just because I have cancer doesn’t mean that I can’t go on as I have lived my life.” So that’s really what beyond the cancer means and it really comes out in the personal stories that we hear from our volunteers.
Dick Woodruff: Yeah and I’ll just add to that. At ASC CAN, we have probably 500,000 volunteers to take action on legislative issues and many of these volunteers are cancer survivors. When we talk to them about this issue, they love this issue because they know that there is nothing more dehumanizing than to experience the healthcare system as a cancer patient. And when you are dealing with multitudes of doctors who are really trying to do their best to save your life, but speaking a language that you don’t necessarily understand or communicating with you and your family in a way that you don’t understand – there is a real objectifying quality that the patients understand. So really, what this advertisement is about, is stripping away the cancer and restoring the essential humanity of the patient. And we didn’t really know when we put together that advertising campaign, really how powerful it would be to the patients and I’m still blown away by how powerful it is. But that’s essentially what it is, it’s about restoring their humanity.
Q. What are you doing, and what are your next steps to try to get these two bills passed?
Keysha Brooks-Coley: Sure, so we have a lot of efforts that are going forward with the Coalition. As Dick mentioned, we have 20 groups that we are working very closely with and actively working together to meet with members of Congress to try to get more cosponsors added to the bill. Collectively, we are going to be hosting a lobby day on July 23, where we are going to have a lot of the organizations that we are working with, bringing researchers, individuals who are a part of their organization, and volunteers to actually go up to Capitol Hill and meet with members of the staff to try to get additional support as well. And it’s really with the goal to try to get the bills through the legislative process and acknowledging that the first step in doing that is trying to get as much bipartisan support as we can in both the House and the Senate.
Q. How are people able to support these efforts?
Q. Are there other issues that need to be addressed as part of legislative efforts to support the movement of palliative care?
Keysha Brooks-Coley: There are. One area that we are working collectively with is around payment and making sure that providers who are providing this type of care–your palliative care doctors, as well as nurses and other social workers–are receiving reimbursement for this type of care. Currently for palliative care specifically, there are ways that providers are able to bill for some areas of the care that they are providing. But one of the reasons that the access to palliative care is not as robust as we feel it can be, is around the payment issue. And so we are working with CMS to try to figure out how we can move that conversation forward around “how do we provide better payment to providers for providing coordinated care?” So that’s an area that we are working on, focusing on the regulatory side as well as on the legislative side.
Q. Is there anything else that you wanted to share about these efforts?
Dick Woodruff: Well we want to get as many people involved as we possibly can. So one of the things that we are doing is actively recruiting additional members of the Coalition because we think that every time we get a new group, we have the opportunity to educate all of their stakeholders and constituents as well, so that’s a big effort for us. And we are going to continue to advertise, I think, throughout the year, in both online and in print. Stay tuned!