Q. I read somewhere that there is a screening tool that was developed to more accurately predict someone’s risk of dying based on different factors. Do you know more about this or other screening tools that are out there and how they work? Is this too much information, or can people use this information to plan for end-of-life care? Thanks for your help!
A. You are correct. Although it sounds like a ghoulish April Fool’s joke, a computerized tool called the Geriatric End-of-Life Screening Tool, or GEST (even the acronym sounds like a joke), can accurately identify if seniors visiting the emergency department have a high risk of dying within six months, according to a new study in the Journal of the American Medical Association.
GEST looks at criteria such as age, vital signs, blood tests, and past hospitalizations to determine a patient’s mortality risk over the next six months. In the study, GEST proved to be fairly accurate in more than 80,000 emergency department visits by older adults, flagging 11.8 percent of individuals as high risk. Of those individuals identified as high risk, 43.7 percent actually died within the following 6 months.
Study authors believe that this tool will benefit individuals and their families most by prompting them to have needed discussions and plan for end-of-life care preferences and priorities.
Of the people with serious illnesses, such as cancer, dementia, or organ failure, almost half (45.1 percent) were actually classified as LOW mortality risk by GEST, which also turned out to be quite accurate, as only 8.1% of people in this group died within 6 months, suggesting that their illnesses may have been stable or progressing slowly. Perhaps most surprisingly, GEST identified 2.6 percent of people without any diagnosis of serious illnesses as having a significant mortality risk, and more than one-third of this group (34.3 percent) died within 6 months. This finding indicates that GEST may be able to identify undiagnosed or worsening conditions that put a person at greater risk of dying within the next 6 months.
The researchers are optimistic that GEST could help medical professionals assess your medical condition and improve your end-of-life care by automatically flagging high-risk individuals for care-planning discussions and end-of-life planning they may not have done otherwise.
Other End-of-Life Predictor Tests Aren’t as Accurate
Many other end-of-life screening tools have been developed over the years but aren’t nearly as accurate. A recent study examined 14 unique screening tools. One simple screening tool, the surprise question (SQ), was found to have only moderate sensitivity and specificity to accurately predict future patient mortality, but the others did not perform as well. In the past few years, clinicians have been encouraged to utilize the SQ — which simply asks the physician “would I be surprised if this patient died within 12 months?” – to identify patients at high 1-year mortality risk. This diagnostic tool helps clinicians identify patients at risk for unmet palliative care needs who could benefit from advance care planning discussions. In most studies, the SQ was utilized as one aspect of an assessment that included other prognostic tools.
The Needs at the End-of-life Screening Tool (NEST)is another popular tool that screens for palliative care needs across four domains: social needs, existential matters, physical and psychological symptoms, and therapeutic concerns. NEST was actually the first data-driven, comprehensive tool that uses survey questions for clinical use in end-of-life care.
Quality of Life at the End of Life (QUAL-E) also assists in evaluating the quality and effectiveness of interventions targeting improved care at the end of life. It has been around since 2004.
Deciding What Is Most Important to You at End-of-Life
Knowing when you are nearing the end of life can be scary for those who are not ready to accept their own mortality, but it can also be very important. If you haven’t already done your Estate Planning and Elder Care planning with an experienced Elder Law attorney, it is of course vital that you prepare for and make decisions about what type of support and care you want, who is going to help you make those decisions, and to whom you want to leave your assets. Even if you have already done your Estate Planning and Elder Care planning, more precise end-of-life assessment tools such as GEST can help better provide an opportunity for you to review your preferences for end-of-life care, including medical care, care to prolong your life, care to enable you to maintain independence, care to relieve your pain and suffering, and care for you to maximize your time with family and other loved ones.
Important Things to Consider at End-of-Life
- Completion of an advance medical directive is a major priority, if not already in place. An advance medical directive will document your goals and preferences for future medical and long-term care, and identify who you want to be your medical decision-maker during a time when you may not be able to make medical decisions for yourself. It can be helpful to include your loved ones in your decision-making process. This can be a tough process, and everyone may not agree with your choices. But remember, it is your choice, and you are the one who must be comfortable with your end-of-life wishes.
- It’s important for you to document your end-of-life preferences, such as where you want to receive care and whether you want certain types of care to prolong your life. So your family knows your wishes, you should answer questions such as these in a comprehensive advance medical directive such as our 4 Needs Advance Medical Directive®:
- Do you want to be hospitalized in an emergency?
- Do you want to be intubated if you cannot breathe on your own?
- Do you want to be resuscitated via CPR?
- Do you want kidney dialysis?
- Do you want to be fed through a tube?
- It’s important for you to document any cultural, religious, or spiritual beliefs or values that might affect your decisions. This can also be done via our 4 Needs Advance Medical Directive.
- You should ensure that you have named someone as your agent in your advance medical directive who is trustworthy, supports your decisions, and will stand up for you and your wishes.
- It’s important for you to document your end-of-life preferences, such as where you want to receive care and whether you want certain types of care to prolong your life. So your family knows your wishes, you should answer questions such as these in a comprehensive advance medical directive such as our 4 Needs Advance Medical Directive®:
- Do you want hospice care? Hospice care is always an option as you get closer to dying. Hospice care is a special kind of care for people who are expected to live no more than 6 months. Hospice care focuses on the quality of your life so that you can live as alert and pain-free as possible. Hospice care can be provided in the home, in an assisted living center, in a nursing home, or in an inpatient hospice facility, though there are very few hospice care facilities. Usually, hospice care provides a wonderful experience, but sometimes it backfires. Click here to read more about the pros and cons of hospice care in my many articles on the subject.
- Completion of a financial power of attorney. Everybody over the age of 18 should sign a general financial power of attorney (also called a general power of attorney or a durable power of attorney) to name someone who can step in to take care of paying your bills and handling your other financial and legal affairs if you become incapacitated prior to your death, because no one knows when such an event might occur. Obviously, if you have not already signed a general power of attorney (or updated it in the last five years) by the time you are nearing the end-of-life, it is especially important at this time to sign one, because there may be months or years during which you can no longer manage your financial and legal needs.
- Meeting personal goals: As you get closer to the end of your life, you might have some personal goals. Achieving them might help your life feel meaningful and complete. For example, you might want to:
- Travel somewhere you have dreamed of going;
- Connect with old friends or relatives;
- Read a favorite book again or see a favorite movie;
- Spend time with people who are important to you;
- Attend a special event.
Discuss these wishes and see if your loved ones can help you accomplish any or all of your goals.
When Assisted Living May Be the Best Choice
An assisted living facility or small group home may be the best choice for you if you only need a low or moderate level of care for physical medical issues or dementia care. Most assisted living facilities devote part of their facility to what they call “memory care,” which is a portion of the facility that can better take care of people who have dementia with “exit seeking” behavior or who always seem to want to go “home,” so if you fall into this category, you will not be able to leave the premises without proper supervision.
One very important fact to understand is that assisted living facilities are expensive and are, for the most part, private pay, meaning they generally do not take Medicaid because they are not nursing homes.
- In Virginia, if you have very low income, you may be able to qualify for the Auxiliary Grant program, which is not a part of Medicaid, but which can help pay for an assisted living facility, but Auxiliary Grant openings are few and far between.
- In the District of Columbia, Medicaid will pay for assisted living in certain assisted living facilities that accept Medicaid, if you are in need of the nursing home level of care.
- In Maryland, there is also a Medicaid waiver program that will theoretically pay for nursing home level care in a participating assisted living facility. But all Maryland Medicaid waiver programs are severely underfunded and almost impossible to obtain.
When a Nursing Home Might Be the Best Choice
If you are nearing the end-of-life, nursing homes might be the best choice and sometimes the only choice. Nursing homes provide the highest level of care possible outside of a hospital. Nursing homes can deliver 24-hour care to seniors who have complex medical conditions and need a high level of hands-on assistance and monitoring. Nursing homes can also provide simple custodial care if you do not have any complex medical needs. Often an important issue, almost all nursing homes accept Medicaid, meaning that with proper Medicaid asset protection, you and your family do not have to go broke paying for nursing home care. It’s also important to note that hospice care can be provided to you in a nursing home.
In nursing homes, a licensed physician supervises each patient’s care, and a nurse is always on the premises. Most nursing homes have medical equipment that is normally found in hospitals, such as X-ray equipment, hospital beds, and Hoyer lifts, and a few nursing homes even have ventilators.
A nursing home is often the best choice if your medical needs require full-time nursing care or access to services and facilities that are more like the hospital than home. Some individuals must transition to a nursing home full-time after a major stroke or a major bone break or a serious infection, or when a senior is continually in and out of the hospital due to events such as repeated falls or repeated urinary tract infections. Because skilled nursing facilities offer extensive care, they can provide more stability to seniors who might otherwise spend extended periods of time in the hospital. Nursing homes also provide an event calendar and specialized dining choices.
Nursing homes may also be needed for you if you need dementia care. In fact, 60 percent of nursing home residents have some level of dementia. Because the later stage symptoms of dementia are so severe, it is safe to assume that if you have Alzheimer’s or another form of dementia, a nursing home will be a consideration at some point in the progression of your disease.
Paying for Nursing Home Care
The cost of nursing home care in our area is around $12,000 – $17,000 a month. With such long-term care services being so costly, how can anyone afford them without going broke or depleting their assets?
Medicare will pay for short-term care accompanied by rehabilitation that takes place in a nursing home/rehab center following a three-day hospital inpatient stay. But Medicare does not pay for long-term care!
Medicaid, on the other hand, is the single largest payor of nursing home care costs because so many people can’t afford to cover the costs themselves. However, Medicaid eligibility is the most complex area of law in existence and has complex income and asset and functional capacity requirements, making it extremely difficult to qualify without the help of an experienced Elder Law attorney with a large team of supporting staff, such as myself and our Medicaid Planning team here at the Farr Law Firm.
Planning for Long-term Care
When it comes to planning for long-term care, Medicaid Asset Protection Planning can be started while you’re still able to make legal and financial decisions or can be initiated by a spouse or adult acting on your behalf as your agent under a properly drafted Power of Attorney, even if you are already in a nursing home or receiving other long-term care.
To afford the potentially stratospheric costs of nursing home care without depleting all of your assets, people nearing the end-of-life should begin Medicaid Planning as soon as possible. Here at the Farr Law Firm, our Medicaid Planning attorneys, along with our Medicaid planning paralegal team, does Medicaid Asset Protection Planning for people every day. To get started, just give us a call:
Elder Care Fairfax: 703-691-1888
Elder Law Fredericksburg: 540-479-1435
Medicaid Asset Protection Rockville: 301-519-8041
Estate Planning DC: 202-587-2797
About Evan H Farr, CELA, CAP
