Caregiving

Advance Care Planning: Reminder for YOU to Have the Conversation

By Cozzie M. King, National Coalition for Hospice and Palliative Care

The scenario generally plays out the same. A person becomes ill…too ill to make decisions for themselves…too ill to communicate with the attending medical staff. Nearby family rush to the hospital bedside. The physician explains what’s happening to the family. Things aren’t looking good or the medical terminology is not easy to understand. After some time, the family is left to make decisions for their seriously ill loved one. Decisions that have not been discussed or thought about prior to this point. What do we do? Who has the final say? Things normally go downhill from here. You’ve seen it. I’ve seen it. Medical staff dread it. No one wins. Making healthcare decision at the hospital bedside is not the right time. These conversations need to happen before the crisis, not during.

Speak Up

As a mom, sister, daughter, past and future caregiver, I understand the importance of having conversations about my future healthcare decisions with my family and friends. These conversations can be hard to begin. However, there are many resources, tools and games that help families have these talks in creative ways. Over the years, I have facilitated several talks on how to plan and communicate your future healthcare decisions.  One of my personal favorite resources is the Speak Up video. This video is one of the tools I consistently use when explaining why it’s so important to have the conversation and complete an advance directive.  I encourage you to post and share this video with your family and friends on Facebook. They’ll thank you later. The message is short and simple.  Check it out:

Click to watch NHDD Speak Up Video

As we advocate for more families to participate in advance care planning, keep it simple. I remind my family and friends that advance care planning is much more than completing a form. It really is more about the conversations you have before and after any document is completed.

Lead By Example

April 16th is National Health Care Decisions Day (NHDD) and this year’s theme is, “It always seems too early, until it’s too late.” NHDD is a call to action for EVERYONE to:

→Think about your beliefs and values,
→Write them down,
→Choose a healthcare proxy (someone who speaks for you if you are not able),
→Complete an advance directive, and
→Share with your healthcare proxy, family and doctors.

The purpose of NHDD is to inspire, educate and empower the public and providers about the importance of advance care planning – and most importantly, to encourage people to express their wishes regarding healthcare and for providers and health care organizations to respect those wishes, whatever they may be. As someone in the health care field,  be sure to complete your advance directive and encourage your colleagues and loved ones to do the same. Practice what you preach. Read related story in TMC News

 

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Home Health and Hospice Admissions, Utilization Trending Up

Author: Amy Baxter, Home Health Care News

Home health care and hospice admissions and utilization are both on the rise, according to the latest data report from Excel Health.

Hospice admissions grew 4.6% from the third quarter of 2016 to the third quarter of 2017, rising to 313,500, according to the report, which is based on 100% of the most recent Medicare Part A and B claims data. Excel Health offers on-demand, cloud-based data solutions and has robust medical databases.

Over the same year-to-year time period, hospice utilization grew, with 48.8% in the third quarter of 2017 being the highest utilization to date, and 1.7 percentage points greater than in the third quarter of 2016. Utilization is measured as the number of decedents that had hospice care over the number of total decedents.

Hospice admissions grew year over year in all states except five—Maine, North Carolina, New Jersey, New York and Iowa. Wyoming experienced the highest admissions growth, rising 19.2% year over year.

Nearly all states also had higher utilization rates, with only two states—North Carolina and Arkansas—seeing a slight drop in utilization year over year.

Home health care admissions grew 0.7% in the second quarter of 2017 from the same three months in 2016, reversing a negative trend seen over the previous few quarters. Fourteen states saw a decline in admissions year over year. Wyoming had the highest growth in admissions—13.2% year over year.

Utilization remained near its constant rate, around 1.6% for all Medicare beneficiaries in the second quarter 2017, according to the report. All states saw higher utilization of home health care services, with both Massachusetts and Mississippi growing 2.4% year over year.

As more baby boomers age into Medicare eligibility, the proportionate demand for home health care has dropped, as the average age of Medicare beneficiaries declines. Demand will likely rise again as a proportion of the Medicare population as baby boomers age.

The growth of home health care and hospice services is not totally surprising, as 10,000 baby boomers turn 65 every day.

From the third quarter of 2016 to the same period in 2017, the total number of Medicare beneficiaries rose 2.3%, from 56.1 million to 57.5 million, according to the report. And the growth of beneficiaries also means spending will rise. By 2027, the rate of Medicare spending as a percentage of total federal spending is expected to rise to 17.5%.

 

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

———–

Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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Death, Driving and Dollars: 7 Strategies to Discuss Taboo Topics

Discussing Taboo Topics with an Elderly Loved One

Man wearing money sign - Discussing money is always sensitive.No one relishes the thought of pondering death for too long. Aging adults don’t want to consider what giving up the keys to the car will mean for their independence. And, thanks to the prevalence of identity theft, financial information always has an aura of silence surrounding it.

However, as you begin assuming more and more responsibility as a caregiver, there will come a time when you will have to discuss these awkward issues with an aging family member.

7 Strategies for Discussing Sensitive Subjects with an Elderly Loved One:

  1. Don’t give advice unless it’s asked for: This is an especially important tip for adult children who are looking after their aging parents. Your mother and father are used to providing you with advice and guidance. When this dynamic begins to shift, it may start to lower their self-esteem and make them feel out-of-control. Getting an outside expert—such as a financial advisor, or elder law attorney—to provide professional guidance can make an elder more receptive to new information.
  2. Pick your battles: It’s likely that your loved one needs help with multiple tasks—don’t try to tackle all of them in a single conversation. Prioritize their needs and address those needs over a series of discussions. This will allow each talk to remain focused on identifying a single problem and all of its potential solutions.
  3. Listen to what they’re saying: Make sure you’re really listening to what your loved one is saying. Try not to interrupt, or fill the silence during a conversation. When it’s your turn to speak, Mother and son having discussion in kitchensummarize what you think your loved one just said and then ask them if you have correctly interpreted their sentiments.
  4. Accept differing viewpoints: Expect and accept disagreement, especially when discussing hot-button topics. Acknowledge your loved one’s questions, concerns and viewpoints. Try to come up with a compromise that everyone can accept.
  5. Speak calmly and clearly: Especially if things begin to get heated, avoid raising your voice or shouting during a conversation. An argument can quickly escalate if either party starts acting flustered. Also, when speaking to older adults with hearing issues, it’s important to keep your voice low and to make sure to properly annunciate. This will smooth the communication process by ensuring that your loved one is literally hearing what you have to say.
  6. Don’t patronize: No one likes to be talked down to, especially if they’ve been living decades longer than the person they’re conversing with. Even if you’re talking to someone who suffers from Alzheimer’s, or some other form of dementia, don’t infantilize them by speaking to them the same way you would speak to a child.
  7. Choose your setting carefully: Plan out where you want the conversation to be held. Pick an area that is quiet and has few distractions (television, radio, too many people). Make sure you’re facing your loved one at all times.
  8. Put yourself in their shoes: Remember that your loved one is probably feeling like they are losing control over their own life. In their mind, their freedom and independence are being threatened. Be mindful of these feelings and approach every discussion with sensitivity and empathy.Asian mother and daughter having discussion outdoors

Provided courtesy of AgingCare.com, the go-to destination for family caregivers. AgingCare.com offers resources and support to help guide family members through difficult conversations, like talking with parents about death or money. This article is one of a series of articles included in the eBook, Family Caring for Family. Download your free copy at www.AgingCare.com/ebook.

 

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Helping an Aging Family Member Plan for the Future

MomAndDaughter

Take Control While You Can

The importance of advance planning for aging adults (especially those suffering from chronic illnesses) cannot be overstated. Without the right legal and financial documentation, caregivers and their loved ones could be faced with a host of problems in an emergency. Doctors may refuse to discuss important medical information with a caregiver, a dying elder may not get the end-of-life care they desire, and control over an incapacitated loved one’s bank accounts and property could be given to a complete stranger.

6 Must-Have Legal Documents for Family Caregivers

You can help a loved one plan for their current and future medical and financial needs by working with them to prepare six essential legal documents, described in further detail below:

Important documents for managing medical care

Important documents for managing finances

An elder law attorney can assist with the preparation of these documents; as well as valuable guidance for taking into account your loved one’s Familyindividual situation and preferences when planning for the future.

Don’t Wait for Disaster to Strike

Getting the necessary documents in order before a medical or financial disaster strikes can make an extremely difficult situation just a bit easier to navigate. Knowing that you’re carrying out your loved one’s wishes, even though they may not be able to voice them, can ease the crushing feelings of guilt and doubt than caregivers often experience in these situations.

*An additional note about POA: There can be confusion with regards to the difference between “durable” and “nondurable” powers of attorney. A durable POA is one that endures a person’s incapacitation, meaning that, until a person either passes away, or is able to regain control of their own affair, the POA remains in effect. This is as opposed to a nondurable POA, which becomes null upon a pre-defined contingency—such as a particular date, or in the event of a person’s incapacitation. For additional information on POA, see: Things You Can and Can’t Do With POA.

Provided courtesy of AgingCare.com, the go-to destination for family caregivers. AgingCare.com provides resources and guidance through financial and legal concerns, such as guardianship of elderly parents. This article is one of a series of articles included in the eBook, Family Caring for Family. Download your free copy at www.AgingCare.com/ebook.

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