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Caregiver's Challenges with Hospice

When my Dad passed from pneumonia a couple of years ago, it was his third and final battle. We were shocked because twice before he did fine with treatment. Once he was admitted to the hospital we kept high hopes as we had before. Now that I have learned more about this stage with Mom I cannot help but think back to Dad's final weeks.

Dad started out in a veteran's hospital but was later transferred to a public hospital because the ICU unit at the veteran's hospital was under construction. He was transported safely and his care was continued for three more weeks before we were finally told that he was terminal. No mention of Hospice services or bereavement counseling was offered to our family which is required to begin before the patient's death. It never occurred to me to ask what our options were because we were hanging onto every detail of each status update when the doctors did their rounds with their medical interns.

Now that Mom's journey has taken the turn down an unfamiliar path with kidney failure it did occur to me to begin Hospice services sooner than later because of where my proactive journey has taken me. I was familiar with the services but not with the challenges I faced. I was disgusted to find an underbelly linked to quid-pro-quo business relationships which most of you hear as kick-backs. To avoid being taken advantage of, the Caregiver must continue evolving through end times to become a smarter consumer and advocate.

Word of mouth marketing or referrals from family and friends is incredibly important when making these choices. It is hard to suspect when your loved one will take a turn for the worse if you are not fully submerged and understand all the medical jargon from normal doctor visits. When you are in an emergency situation services most services are provided through insurance so you have some knowledgeable professionals to fall back on, but trusting where their advice or medical guidance is coming from can be tricky.

During August 2021, Mom had a blood panel completed to understand what condition her heart and kidneys were in with other markers. She had some red flags showing issues with her kidneys. Managing congestive heart failure means possibly straining your kidneys in the process. By October 2021 Mom's next blood panel revealed she was in stage 3 of 5 kidney failure. Alarming results made me look further into this to see what could be done. While I was panicked because I felt thrown into a reactive state once again, Mom was calm and apathetic towards life-ending. Mom decided she was ready to let go of her time here on earth and I realized I was not ready yet.

We reached a point of calm in our relationship for the past couple of years which I felt was in part to improving her quality of life. Well as long as she could not eat what she wanted, when she wanted, no matter how potent to her system, she no longer felt she had a quality of life. I tried to make some concessions here and there with a Sprite or Ginger Ale, maybe order her favorite pizza, but those concessions came at an emotional cost. When do I give in and let her be or continue to redirect and substitute healthier options? When do I stop fighting for her life and just let this journey go in the final stretch?

I was told stage 3 can be manageable if taken very seriously with good daily nutrition choices and a great Nephrologist. Knowing Mom very well at this point, healthy nutrition options would not only be a challenge for her, insisting would only aggravate her and strain our remaining time together with useless bickering. So after a visit to the cardiologist, I needed to check in with her once again to make sure we were still on the same page of her final wishes. We left the parking garage and headed towards an afternoon treat for pizza with a tall Sprite. The question felt stuck in my throat while I watched her take a bite and experience a moment of bliss as she chewed, cheeks bulging.

Mom: "Thank you so much, Jess, this is SOOOOOO good!" Grease ran down her chin.

Me: "Glad you are enjoying the pizza. So, Mom, I was just wondering. Do you know what dialysis is?"

Mom stopped midchew with her brow scrunched and nostrils flared a bit. "Yeah, why?"

Me: "Well since your kidneys are at stage 3 and you're not trying to help your body to slow any progression, it is possible that you may need dialysis by the time you reach stage 5."

Mom: "NO - absolutely Not. I do not want dialysis."

Me: "Then do you understand by not having dialysis when you need it that your heart could stop or you may experience other uncomfortable problems before your heart stops."

Mom: "That's fine with me. I have lived a long life and I am ready for it to be over with already."

With that response, I knew what had to be done next. I started to get Hospice in place so we had time to adjust to this next level before we were in crisis mode. Knowing what Hospice is and who pays for it is one thing, but getting it started is not something the average Caregiver is prepared to face. Time to switch hats from the loving and exhausted caregiver over to the inquisitive consumer.

The first thing I did was ask friends who I knew used Hospice Services for their recommendations. Then I looked online for customer reviews of each company. Then I went a step further and looked on and to read employee reviews of each company.

After leaving the corporate world, I knew the honest reviews would be from the employees over any planted customer reviews. If I found a recommended company with more disgruntled employee reviews than happy ones, then I scratched the recommendation off my list. If they hate their job or spoke of unrealistic expectations and hours, regardless of pay issues, then I knew they would only bring toxic energy around Mom.

I thought this process was going to be as simple as calling the chosen company and explaining the situation than saying - "You're hired." It can be when the qualifying process runs smoothly as planned. If you face the challenges I did, then you need to be aware of some misconceptions when seeking Hospice services for your loved one.

1) The association of Hospice means death.

Not true. Hospice is a service for our loved ones to keep them from suffering while they transition through the end stages. Even doctors will prescribe home health services before they prescribe hospice services when they know their patient is terminally ill. Home health is the curative or rehabilitative approach.

2) Hospice services only provide limited benefits for those already actively dying.

Not true. When you find a good hospice company they will take the time to explain the benefits first. Your loved one will receive a higher level of care than that of most assisted living communities. Hospice nurses, techs, staff, volunteers fight for quality of life and respect the patient with their family to ensure a peaceful end, no matter how long it takes.

3) You are stuck with the Hospice company you choose.

Not true. Your choice remains "Your" choice no matter how many times you decide to change companies. If you decide your first choice was not the right fit for your loved one then you can initiate a process with another company. The new company will assist you in the switch of equipment, any necessary paperwork, medications, or point of contact. All you have to do is speak up.

4) If my loved one has a DNR "they won't save them."

This one is not true, but tricky. Please remember the goal intended for Hospice services is to assist someone who is not expected to live due to various reasons. If your loved one signed a DNR then legally they cannot be resuscitated per their dying wish. Even if you begged and pleaded to bypass their wishes, then keep in mind what CPR could do to your loved one. When it is done correctly there is the potential for multiple broken ribs. Your loved one, if they were revived, would suffer in pain. Worse still, if your loved one has a form of dementia they may not heal because the brain may be unable to instruct the body to heal which would prolong their suffering. Hospice is for the quality of their remaining life, not curative to save their life.

5) I can initiate the first-time set-up of Hospice services without a doctor.

Not true. Once you choose the Hospice company, then you need to request their doctor to issue a Hospice order (in the U.S.) The order does not need to come from any specific doctor like their GP or Neurologist. It can be provided by their most recent visit for any reason, from a follow-up appointment with their Cardiologist for example. According to the National Association for Home Care & Hospice, any doctor or assisted living community is supposed to provide you with at least three options of Hospice companies to choose from if you do not have your own specific choice ready. They are not allowed to hold the Hospice order hostage unless you choose the company they endorse or are affiliated with.

If your loved one resides in an assisted living or memory care community, you will still need a doctor to prescribe the order for Hospice but the order does not have to come from the community's medical director.

6) Hospice is only an end-of-life service and does not include other comfort care services.

Not true. Hospice includes many services such as access to Chaplain counseling, volunteers for extra help, Medicare-paid prescriptions and equipment (in the US), companionship, and additional comfort care plans. The problem with understanding how wonderful Hospice services are is tied to the misconception that hospice = death.

When families wait too long to request a doctor to prescribe hospice services they get the basic services of a bed and maybe a final shower simply because they ran out of time. Doctors will avoid prescribing hospice because they lose a billable patient. What's happening more often is doctors and communities try to encourage or dictate their choices when caregivers simply do not know any better. This works in favor of building their network of referrals but may not keep your best interest in mind. We need to know what our choices are rather than made for us or have them taken away during such a desperate time for peace of mind.

Doctors who are emotionally invested may still follow up with their patients but do not get paid to so families are faced with a disconnect. Doctors have to decide to remain emotionally connected or pursue the best interests of their financial investments in their practice.

7) Choosing Hospice will cancel or change my insurance.

Not true. Once your loved one qualifies for Hospice services it is paid by Medicare. Every change in medication has to go through the medical director of your chosen Hospice company. Your loved one's insurance carrier is provided updates but does not gauge your loved one's decline to limit benefits.

8) My loved one can no longer have aggressive procedures done once they begin Hospice services.

Not true. More unforeseen stress because the caregiver is in a position beyond their knowledge with limited resources to meet their educational needs. If your loved one requires falls for example and requires surgical procedures then they are discharged from Hospice so their insurance can cover hospital charges and then later reinstated to Hospice services when they are discharged from the hospital or rehab center.

Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care everybody.

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