The Need to Coordinate Your Health Care and Of Those You Love And How

Caregiver-masterWhatever age, we have to consider how to coordinate our own health care.  Boomers are the sandwich generation and have to worry about not only ourselves but those we love younger (and much younger, our grandchildren) and our parents, if we are fortunate to still have them with us.  Our adult children are not as tuned in as we, and tips on how to coordinate health care, are important to talk about and consider with all adult generations.

This Grandma has personally experienced the need to coordinate ones’ own health care. Even though having the best doctors possible, coordinating blood testing so all doctors receive the results, relating symptoms and problems, I ended up with having to personally piece together  three doctors’ individual advice to finally result in a solution that worked. I ended up coordinating my own health care and finding the answer.

We read many articles and see many programs about drug interactions and adverse consequences.  Our family also experienced that with GG (great grandmother).  The recommendation from a recent Today Show medical contributor said to take all of your medications to a pharmacist and have them evaluate this, or to your primary doctor.

So we learn, despite paying for the best quality care that we can, that it is our responsibility to coordinate our own health care and the health care of those we love, now more than ever.  It seems that health care is not only a national problem, but a personal one too.

Austin Frakt, in the New York Times, June 13, 2016, in “The Downside of Merging Doctors and Hospitals,” says that the doctors we see may belong to different organizations that have no effective means of communication with one another. He calls it the “standard advice” to monitor your own medical care, especially if you are hospitalized or have complex medical conditions. I have not heard this, so who is supposedly giving this “standard advice?”

He defines monitoring your own care as “tracking what each specialist advises and prescribes, ensuring it gets done and informing other doctors about it. Failure to monitor, communicate and coordinate care increases the chance of errors and omissions that can harm health.”

This Grandma has seen this, experienced this, and many specialties overlap where symptoms, unless shared with all of one’s doctors can end up with more, rather than less problems.

Keeping track of all doctors, pharmacies, medications and doses is a given.  I have put it on the computer, and on my electronics, and update appointment dates and changes.  It is wonderful when a doctor asks a question, and you have the answers regarding all of this in one place.  The key is the updating.  It is cumbersome but necessary.

If you or a loved one are already hospitalized or suffering complex medical conditions, this is too difficult to do on your own, and we Boomer Grandmas already know we have to be the medical advocates for our parents and loved ones. Even trying to do this right, we, who are not in the medical field, have difficulty with terminology, practices and procedures, like hospital case managers, prompting early discharge, recovery in specific rehabilitation centers or with home nursing agencies, that are not the best or in our best interests or that of our loved ones.

I discovered that hospitals have preferred rehabilitation centers and home nursing agencies, and one must also research these on one’s own.  I found one agency recommended by a supposed very highly rated hospital inadequate, with ill equipped personnel, and detrimental to my recovery.  It took two to three agencies to find a good one, and the transitions are difficult when one is in recovery.  The agency that I finally found competent was a recommendation from an acquaintance.  I now listen when others say they just had a wonderful experience with an aide or home health care agency.  I ask friends and others who they have used, especially for home health care aides.  When a friend mentions one they felt was good, I keep the name(s) for future reference, and hope I will not need it.

Do not just accept a hospital case manager’s recommendation.  Ask questions and interview not only the case manager but the recommended company.  Unfortunately, we rarely see a case manager before time for release, and then we are under the gun.  Ask early for consult with a case manager, for recommendations and pay attention to the reasons for the recommendations.  Hospitals are understaffed and overworked too, and getting this assistance early requires persistence with medical and hospital personnel.

I have discovered the difference between being “under observation” rather than “being admitted” into the hospital, and what that means to what and who pays for the consequences of the admission status, and the entitlement to rehabilitation.  We now have to look at admission forms in the hospital and ask questions about our status and the status of our loved ones.

The article mentioned another alternative, that I did not know of, “a professional patient advocate, who may charge $100 or more an hour to coordinate care. Some employers may pay for the service, but neither Medicare nor most health insurance plans do.”

If we are overwhelmed, or just live at a distance from those we love, how do we find such assistance?

I would think asking a doctor might be a first step; however, that is not their expertise.  A personal recommendation is best, but, on line, looking at Florida, there was information on the internet, “AdvoConnection: A Directory of Private, Independent, Professional Patient Advocates and Navigators.”

However, beware, as there presently is no nationally recognized and respected patient advocacy certification for private, independent patient advocates.  There is a certification credential being created by the Patient Advocate Certification Board that will become that nationally recognized standard.  See their website more information and sign up to get updates if you think this is something you may need in the near future.

In the meantime, we Boomer grandparents are honored to be the advocates for those of the

great grandparent generation.  We are so happy to have them here to share life and life passage events.  Our responsibility grows as they live longer.  Dhruv Khullar, New York Times, January 19, 2017, “Who Will Care for the Caregivers?” informs us of the less than adequate acknowledgement of the involvement of family as advocates, how little is being done by government to assist, and how family as advocates will be unsustainable in the future of Boomers’ care.  See a previous post on overmedication, “Grandma Trying to Understand and Prepare for the Ramifications of Unintended Medical Consequences of Aging.”  

Remember that hospice is a wonderful service when the time comes that such service is needed.  See, also, “We’re Bad at Death. Can We Talk?” by Dhruv Khullar, New York Times, May 10, 2017, for more information about Medicare and the hospice system and its challenges.  But, there too, there are tips to remember.  Near the end of life, we advocates for those we love are in the best position to know when the final signs of life are most evident and the pain thresholds for our family members.  We are in the best position to coordinate the family saying goodbye, a hospice requirement at the end of life.  We are in the best position to know what ‘agitation,’ an end of life sign, looks like for the ones we love and are close to, and how close are loved ones truly are to the end of life. We have to be involved and vocal from beginning to end of hospice care. We are in a position to make sure that suffering is not synonymous with palliative care for those we love.  Again, keep these hospice tips for when they are needed.  Unfortunately, ultimate death is a given.

We Boomers think we will be forever young, and, in any event, do not want to be a burden to our family.  Let’s keep track of our own health care, and hope that there is certification and oversight of those who call themselves patient advocates when the time comes that we need them.  Or, at the least, give them the hospice tips to keep for us.

 

Joy,

 

Mema

 

 

 

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