The AARP Public Policy Institute issued a paper entitled: A Call to Action: What Experts Say Needs to Be Done to Meet the Challenges of Family Caregiving.
They invited 10 authors who have written about the challenges of family caregiving to participate in an AARP Solutions Forum on the issue. Here are some of the highlights. In many respects the conclusions are not much different than the National Alzheimer's plan. It calls for:
- Greater public education and awareness
- More financial relief
- Better communication, coordination, and collaboration with health care professionals
- Heightened recognition of and support for family caregivers in policy initiatives
Ten areas of focus were put forth:
- Caregiving Is a Role and a Relationship - Caregiving is based on a relationship, but caregiving is an additional role that requires preparation, acceptance, support, and resources.
- Families Benefit from Discussing Preferences and Decision Making with Each Other and with Health Care Professionals.
- Long-Term Services and Supports Are Expensive.
- Communication, Coordination, and Collaboration Are Fundamental to Good Care.
- The Most Vulnerable and Traumatic Points in Health Care and LTSS Are Transitions from One Setting to Another.
- Some Help and Support to Care for the Caregiver Is Available if It Can Be Found.
- Being "Proactive" Is the Key.
- Public Policy Solutions Are Crucial.
- Advocacy, at Both the Individual and System Levels, Is a Fundamental Part of Caregiving in Today's World.
- Culture Change Is Needed - Caregiving is now a normal part of life, yet family caregivers remain invisible, isolated, coping stoically, getting random advice. Caregiving families need public acknowledgment, family-friendly workplace environments, and affordable services and supports to assist them in their caregiving role and to help them maintain their own health and well-being.
In addition, lengthy discussions produced these observations, which I share randomly:
- Family caregivers are thrust into this role without preparation, training, or support.
- Older people are marginalized by society. Family caregivers must understand and speak their loved one's language once a person suffering from dementia looses the ability to use words.
- It is critical for caregivers to take breaks and get out of the house.
- Caregivers should focus on maximizing what their loved one can do-- but accept what the person can no longer do.
- People need to anticipate that they will become caregivers; educate themselves that there will be physical, emotional, family, and financial issues; and talk to others.
- An isolated army of caregivers--each operating as a force of one with little social infrastructure and cultural support needs to coalesce in a caregiver social movement similar to what occurred with the feminist and gay rights movements.
- Look for a doctor or nurse who can serve as your health care "quarterback."
- Engage communities and faith-based institutions as a way of supporting caregivers.
- Improve transitions from one setting to another, and train all health professionals to communicate better with the individual and family.
- Incentivize health care workers to include family caregivers as partners in care.
- Educate Americans about what Medicare does--and does not--cover.
- Promote ways that people can talk to each other and share their stories.
- Urge a national discussion about how Americans approach advance care planning.
- Have the option of putting pretax dollars into flexible spending accounts to help pay out-of-pocket costs for eldercare expenses irrespective of whether or not the older adult is a legal dependent of the caregiver.
- Encourage primary care clinicians and other health care professionals to routinely ask every Medicare beneficiary if he or she is a family caregiver.
- Pursue the adoption of electronic health records that include a line designating the primary family caregiver.
- Educate health care professionals and family caregivers about caregivers' rights to receive health care information about their loved one when they are directly involved with the individual's care.
- Create a national council of family caregivers and advocates, including celebrities, to heighten attention to family caregiving issues, to protect the well-being and vital interests of families, and to identify potential solutions to meet the growing needs.
If you scour this blog and my other blog, you will find hundreds of posts on caregiving covering many of these issues. My platform of "Educated Aging" is meant to help not just caregivers and those for whom they care. It is about helping all of us prepare for aging so that it does not always become a crisis situation. Physical aging, emotional aging, financial aging - these are all issues that will affect quality of life as we age.
I encourage more discussion around this. In fact your input is vital to a survey I am conducting in anticipation of developing a smart phone application for caregivers. We initiated this survey last year but frankly have not acted on the development of the app. These insights from the AARP discussion really help to hone in on what might be important in an app. But you the end user are best to share that. Can you help? Play a role in your community by tackling the caregiver issue. Click here to take survey and tell others.
Adapted from Who Moved My Dentures?
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How About We Let This Speak For Itself?
It's pretty ironic that one of our articles this month is about music --- for the dying. Well Matilda is a long-way off from that!
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NJ Assisted Living Partnership Ups Quality Focus
The NJ Department of Health and Senior Services has joined with the Health Care Association of New Jersey (HCANJ) to enhance quality and consumer information about assisted living residences in New Jersey. This four-year pilot program, entitled Advanced Standing, will offer a designation by the Health Care Association of New Jersey Foundation, which verifies that an assisted living facility has satisfied all state licensing regulations and also meets quality benchmarks.
The Advanced Standing program will expand oversight of assisted living facilities and for the first time collect quality data on these facilities. It is a voluntary program that assisted living facilities choose to participate. There are 215 assisted living facilities in New Jersey. Forty HCANJ member facilities have already expressed interest in participating in the Advanced Standing program.
The reaction of the remaining 175 facilities will be interesting. Could non-participation signal disinterest in quality for residents? That would be a big consumer turn off. Then you have the 40 facilities and how they might couch participation and use it as part of their marketing efforts.
Said NY Health Commissioner Mary O'Dowd: "This program also represents a change in culture for state government--more often we are in the position of ensuring minimum standards, which are enforced with penalties and fines. But in this case, we are asking providers to go beyond the minimum--to strive for excellence and be awarded with a special designation." Interesting.
Within this pilot project, the Department would maintain full State oversight of assisted living services and facilities. It will continue to conduct complaint investigations for all facilities, but limit routine inspections to facilities without Advanced Standing. In addition, the Department will randomly conduct unannounced surveys at up to 25 percent of facilities with Advanced Standing in the first year of the project and up to 10 percent each year after to validate surveys performed through this pilot. Until the launch of this pilot, the Department was inspecting assisted living facilities every two years. So again it will be interesting to see how non-participants fare in all of this.
The Advanced Standing status will help consumers choose facilities by also providing information on programs offered at participating assisted livings. Potential residents and their families can ask to see a documentation that indicates the facility has been given an Advanced Standing status. The Department also will note on its website what facilities have the Advanced Standing designation.
So this will truly become a badge of honor and in turn become a marketing and sales advantage. As I have maintained in the past, the blurring of the health care continuum and the increased acuity levels of assisted living residents will cause increased scrutiny on quality. Providers in other states and national chains would be well served to keep an eye on The Garden State.
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NQF Endorses Palliative Care Measures
The National Quality Forum (NQF) Board of Directors has approved for endorsement 14 quality measures on palliative and end-of-life care. The measures address a wide range of care concerns, including pain management, psychosocial needs, care transitions, and experiences of care.
"As the number of older adults in this country continues to grow, palliative and end-of-life care services are needed more than ever," said Janet Corrigan, PhD, MBA, president and CEO of NQF. "This set of measures will help promote the type of high-quality care older people and acutely ill patients deserve."
NQF sought measures focused on care concerns such as managing pain, weight loss, and depression. It also sought measures that would directly assess - and improve over time - the experience of patients undergoing palliative and end-of- life care, as well as the experience of their families. In all, 22 measures were evaluated against NQF's endorsement criteria by a panel of providers, measurement experts, and consumer representatives; 14 measures were endorsed. Twelve measures are new.
R. Sean Morrison, MD, director of the National Palliative Care Research Center and co-chair of the Palliative Care and End-of-Life Care Endorsement Maintenance Steering Committee stated: "This measure set will help support such efforts, such as enhanced treatment of pain and other symptoms, improved communication between providers and patients, fewer admissions to emergency departments, and increased patient satisfaction."
NQF is a voluntary consensus standards-setting organization. It operates under a three-part mission to improve the quality of American healthcare by:
- building consensus on national priorities and goals for performance improvement and working in partnership to achieve them
- endorsing national consensus standards for measuring and publicly reporting on performance
- promoting the attainment of national goals through education and outreach programs.
Palliative care is specialized medical care for those with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. It is not just for end of life care and that is an important distinction.
The measures were derived from a number of sources, including the RAND Corp., the National Hospice and Palliative Care Organization, and Deyta, a provider of healthcare quality measurement tools and benchmarks. You can view NQF endorsed measures here.
As palliative care becomes more understood and more players enter the market, it would be wise to track endorsed quality measures and use them as a guidepost for care. As we say it is the right thing to do but also becomes a marketing advantage when that higher quality standard translates into better patient experiences.
P.S. If there is a palliative care expert that would like to be a guest author for this site, please let me know using the contact form.
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