Hot Topics in Caregiving 2: Case Management

Having served as a volunteer and untrained case manager for my parents’ health issues for many years, I learned much being thrown into the fire of the complexities of modern medicine. Most caregivers do end up in the management role, often with great frustration, but there is more help available for that role than many realize.

Professionals trained in case management can be hired to pull all the resources available together, making the most of the medical community you or your loved one can access.The catch is that most are not covered by insurance.That happened to be one of my soapbox issues offered to the recent meeting with Hallie Hurst who feeds such issues back to Washington.

Using resources efficiently should be of interest to all - and worth the investment. I have no doubt the savings of streamlining resources would more than cover the cost and thus should be included in Medicare and other insurance benefits, saving all money and time. Hopefully, this will happen, but in the meantime, such services should not be immediately discounted due to cost. Some medical practices have even started absorbing the cost of having an on-staff case manager to help their patients, so be sure to ask your doctor if s/he offers that assistance.

Geriatric Case Managers may offer a free consultation if you are considering using their services.The majority of GCMs, often certified in their field, do not have access to billing options that insurance might cover.  

Whether or not there is an insurance company to be billed, it is wise to at least look into such a service. The National Association of Geriatric Case Managers helps link provides to clients. A recent ARTICLE by Reuters News agency highlights times when case management can be helpful. Consider the fact that geriatric case managers work with many clients and are local.That means that the longer they are in business and the more professional affiliations they have, the more resources they know about and can access for you.hey also know the right person to call within each office and which forms need to be filled out for what service. With the wealth of programs and resources available (they ARE out there!) it helps to have someone on your side who already knows what’s available and what’s worth your time pursuing. Consider the value of the time you’d have to take off work to handle all the issues that come up while starting from ground zero and trying to catch up.  

The Distance Factor

Now consider the plight of long distance caregivers. Mom and Dad live hours or states away but you want to help. Deteriorating health or sudden illness has made it clear that they need assistance, but you have a full life no where near them and have no knowledge of their community resources.If they cannot afford case management services for themselves providing it may be one way you can help.

Case managers help prevent individuals from racking up “frequent flyer” points with hospitals.Industry professionals actually used that term to describe patients that repeatedly return to the hospital, usually through the emergency department, because their care is not managed and they are not able to do it for themselves.If an outside party can intervene and organize multiple types of care to address complicated health issues, there is a reduction in avoidable hospital visits.This means savings for the medical and insurance communities, a huge stress savings for patients and families, and better overall care and well being for the patient.

A note of caution:  Realize that pricing for Geriatric Case Management services vary greatly by location and the types of services offered/needed.Try not to discount the idea by hearing of a base rate of $80 or more per hour, which you’ll find if you do a generic online search. Dig for what you can find in your (parents’) community and ask if they offer a free initial consultation. At the very least, you find a service you don’t need now, but might need in the future.You’ve done the legwork ahead of time and can prepare! At the most, you’ve found the answer for ensuring your loved one’s quality of life despite medical conditions you can’t cure. 

Hot Topics in Caregiving 1: The Cost of Futile Care

This week I attended a focus group meeting led by Hallie Hurst, field representative from Congressman Trey Gowdy’s office. Those of us in attendance each shared our insight from our various professional perspectives regarding senior care issues.The goal was to make sure that the concerns of the group were passed on to Washington - a wonderful opportunity! Over the next several posts I’ll get into those hot topics of care with you. Some we’ve touched on before, but now have a new light shed on them; others are new.

Today’s topic: Futile Care - It’s a term caregivers don’t want to hear, but it is an accepted term within the medical community. It refers to looking at the “big picture” and death, challenging areas for caregivers. 

Nancy Dereng, who works with Community Outreach for Interim HealthCare, who has long been an advocate for Advance Directives (ADs), mentioned the high cost of futile care in medicine. The reference was that if more education is done regarding ADs and what the actual dying process involves, the more people would make choices that don’t involve trying every last medical technique or procedure at a time when they simply won’t make a difference in the big picture of the outcome for the patient. The cost is high for hospitals, insurance companies, as well as Medicare and Medicaid programs, not to mention patients and their families. But what also struck me was the great emotional cost attached to futile care. Nancy's seen it first hand, and works hard to educate people of all ages about options that make a difference.  

Are you tying your doctor's hands?

Nancy later shared with me the two main reasons that futile care happens. One is the threat and fear of lawsuits. It’s hard, she explained, for a doctor to say “there’s nothing more we can do.” That's emotionally hard to say and to hear, but in this day and time, there are things that can be done, whether or not the reality indicates they’ll made a difference. The availability of options is the second reason.

A point for patients and caregivers to consider is this: do you want to tie your doctor’s hands and force them to continue aggressive care measures by pressuring them to “just do something” when it’s your emotions that are talking and not a realistic view of the long term impact? If you say “do something” many physicians feel obligated to try something, even if they don’t feel it will make a big enough difference on the outcome. The lifeline you want isn't there. But, they don’t want a lawsuit. Just because something can be done doesn’t always mean it should be done. Unfortunately, the legal climate of our society doesn’t always make the differentiation between ‘can’ and ‘should.’

For Nancy, it comes down to weighing the benefits with the burdens of care. That's the discussion point. If a frightened caregiver or patient feels there could be a benefit to trying one more procedure, they often don’t consider, don’t ask, or don’t want to know, what the burden may be.

ADs take away some of the guess work and in many cases, futility. Understanding when a feeding tube is a real help, or simply a way to prolong the inevitable (with potentially more trauma to the patient), is important. All adults, whether they are seniors, caregivers, or not (yet), need to look at ADs. My favorite program for working through is process is called Five Wishes. Talk with your loved ones BEFORE they ever become an issue of decision making in a medical care situation.

Caregivers need to look at how they approach physicians as well. If you bring rope with you to tie their hands, you may well be making the situation harder for yourself, your family, and your loved one. Instead, give your doctor permission to discuss the burdens of care options when he or she may not feel 'safe' to do so. Ask what they are. Ask what the doctor sees as the big picture and long term prognosis. If you foresee a time when your emotions may get in the way, consider talking with the doctor, with your caree present, before it factors into decision making.  

I have been there. It isn’t easy. During one hospitalization for my father, I told the doctors I was concerned that the time might be coming when we’d need to say ‘enough is enough’ and look toward comfort rather than curative care. I asked them for honesty when that time came, and, if needed, a reminder I’d asked for that. One doctor appreciated it, saying he wished more caregivers would tell him that. Another said he understood, assuring me that he did not feel that time had come yet. A third, looked at me blankly and said, ‘okay.’ Dad’s ‘time’ didn’t come then, but did a few weeks later after yet another hospital stay. He was discharged to come home with hospice care. We all knew the decisions that were made were for my father’s best interest and so did Dad. We'd had the talks. Could the doctors have tried one more surgery? Perhaps. If they had though, it would have been an example of futile care involving a surgery that would have come not just with a cost in dollars to his insurance companies, but a much heavier cost to him, for the physical and emotional trauma of 'trying one more thing' and for his loved ones watching.

Caregiver Golden Nugget:  While you deal with these issues with those you care for, deal with them now for those who care for you. When you ask Mom or Dad what they want for end-of-life care, turn right around and let your spouse, your kids, and your best friend know what you want.

Closed Doors: Important Opportunities for Caregivers

One closed door.....

In the example I gave last week, a woman used a window of opportunity to access care for her husband after he’d come home from a hospitalization and she realized she could not care for him in that environment. Even after being home for nearly two weeks, he still qualified for rehabilitative care based on the recent hospitalization and related diagnoses. Let’s look at what can happen next. 

Because his underlying diagnoses are degenerative conditions, there is only so much that rehabilitation can do. Improvements might be made. Can he come home again? Perhaps. But what if he can’t? Many people find themselves in this precarious caregiver situation questioning what to do next when the rehab of their loved one gives them a window of opportunity to reassess the care environment and long term picture.

For the vast majority, the desire to ‘go home’ is what drives success in a rehabilitative setting. That’s a good thing. But what happens when the caregiver, perhaps a spouse or adult child(ren) realize that coming home won’t be the best option even if gains are made during rehab? Let’s face it - that’s often a heartbreaking decision to be made. When the reality finally hits that home care is not the best care option, it can feel as if a door is closed. Many caregivers feel they have failed. Then factor in the added guilt-inducing factor when the caregiver knows that care elsewhere will make his or her job easier. Ouch. Did I just admit that? How could I say such a thing? Have you heard those words in your head? If you’re in this situation stop beating yourself up. That closed door will open new ones.

Dealing with the disappointment that it can’t be at home is one thing. Blaming yourself for reality is another. Realize that when the door closed on home care, you have an opening for another way to provide care. Your job, whether taken out of love or a sense of duty, hasn’t stopped. The value of what you have to offer hasn’t lessened, in fact, it’s increased. The only thing that has changed is the environment in which you offer care - the picture looks different; but the need for what you have to offer hasn’t.

Now your work is to find the best care environment away from home. Only you, the experienced caregiver can do that. You are quite likely the only one to know all the nuances of care for your loved one and be able to find the best way to fit those into a facility care environment. Perhaps your caree loves music and the new environment must be one where music can be played, where CD players are allowed, and the singing of hymns is encouraged. Perhaps you need to find someplace that allows patient/residents to play a community piano. Perhaps you can find a place close to home, or more central to other family members wishing to visit. Does she need an environment that offers social activities? Or a weekly church service?

Opens new ones....

Does it matter that you’ll finally get rest that’s probably long overdue? Yes! This is a chance for you to recover (and quite possibly from offering in-home care for too long). As your loved one strengthens in rehab, and perhaps a long term care facility, you need this time of restoration. Reconnect with the things of your life that have been put on hold. When you, the caregiver, have a chance to build up your strength, the quality of the care you have to offer, no matter where it is given, improves.You'll find new energy and strength you can use when giving care in a new setting.