End of Life Decisions: Has Your Senior Loved One Made Them? Have You?

What kind of healthcare treatment would you and your senior loved ones want to be given at the end of your life — or would you want any at all?

End of life care is something about which most adults in the US have heard and maybe even considered — thanks in part to television shows — with many having also heard about living wills.

Most have not taken things past the “thinking about it” stage, however, to having serious conversations with family or actually doing something to ensure their wishes are honored.

Enter National Healthcare Decisions Day (NHDD), an effort to educate and inspire individuals to formally express their wishes regarding healthcare and encourage healthcare providers and facilities to honor those wishes.

We thought this year’s NHDD would be a good time to revisit an episode of the Senior Care Corner® Radio Show from a few years ago, one in which we talk about NHDD and use it as a springboard to encourage family caregivers and their senior loved ones to have their own family healthcare decisions day.

Not only is it important for family caregivers to ensure senior loved ones express their wish, but the caregivers need to make their own end of live decisions.

Family Healthcare Decisions

First, I guess we should explain what we mean by the “healthcare decisions” families should discuss.

We’re talking about the type of care an individual wishes to receive — and the care she or he does not wish to receive — when potentially at the end of life, at a time when ongoing life depends on the measures performed.

Examples of these measures include receiving CPR, being placed on a ventilator, or being fed via a tube.

Why are we taking about this now?

Putting aside that we frequently talk about the need for living wills, advance directives, and the family conversations that help make those decisions, we want to get families planning to have these discussions when they gather from their scattered homes for family spring and summer events.

Listen to the feature segment in this episode for our discussion of family healthcare decision making, including reasons why it’s important and how families may approach the conversation.

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Preparing for the Family End of Life Care Discussion

Preparation can help families better face the elephant in the room and have a more successful discussion of end of life options.

  • Learn about what “advance directives” means. We don’t just mean the term but, more importantly, the implications for those making and formalizing the decisions, as well as their family members.
  • Research what is required in your state, or states for dispersed family members, and which decisions are covered.
  • Gain an understanding of various means of life support to give a better understanding of what is involved with the decisions to be made.
  • Consider consulting an elderlaw attorney or other legal reference source to determine what the necessary forms look like, what information is needed to complete them, and the steps to take to ensure they are enforceable.

Catch the full discussion in this episode of the Senior Care Corner Radio Show.

Additional Healthcare Decisions Resources

We hope you like this trip back to a prior episode of the Senior Care Corner Show and find it helpful to you and your family. We have also prepared this transcript – so you can follow along with the recording or read it at your convenience.

 




What Being A Caregiver Has Taught Me About My Own Aging

Being a family caregiver is an experience that will bring many moments of joy, sadness, frustration, and wisdom.

Living this journey can be life-affirming for many family caregivers. It is what you were meant to do – care for someone who once cared for you.

It can have its challenging moments but also brings clarity of purpose and insights if you pay attention.

What will you take away from your caregiving experience that will help you age successfully?

Lessons Learned as a Caregiver

Finding the silver lining in a every cloud, whether it has rain or emanates a rainbow is said to yield a positive outcome for the person who is willing to look for it.

Learning from experience and improving your personal aging experience are worthy goals for family caregivers.

Once you identify the areas which challenge you caring for a senior loved one, you can create an action plan for your own aging to allow you a more successful path in aging.

As I have learned, there are many aspects to that plan.

“I want to stay in my own home”

So you have decided you would prefer to live in your own home as long as possible as you age. Now is a good time to start incorporating universal design in your own home.

Modifying your home for aging needs every time you renovate or redecorate will make aging in place easier for you as your function changes.

For example, exchanging broken fixtures for age-friendly ones will put you ahead of the game and make it easier for your own caregivers.

If your home or your location is not ideal, perhaps now is the time to determine if a move, downsize, or a walkable city is in your best interest.

“I want to be financially prepared for the future and all my needs for aging”

Because you know first-hand from your role as a family caregiver just how expensive aging can be, you know having a sound financial plan will make your future easier.

Rising healthcare costs, limited retirement accounts, cost of living expanding greater than fixed incomes, and outliving the years of funds in the nest egg can be overcome with more informed financial planning.

Are you putting enough money away, do you have a long-term insurance plan, have you maintained a budget and paid off large debt so that you will be ready for the future? We all want to age in place but not enough of us have made the appropriate financial plans to maintain our desired way of living.

It is not too early to seek the advice of a financial planner to help you make a plan for your own future.

“I want to use technology for my benefit and for the ease of my caregivers”

In this digital age, most family caregivers can see that technology has already provided many benefits for seniors who live at home. There are devices and apps that will help keep us safe at home, connected to the community and allow us to manage our personal data.

The best is yet to come!

These innovations will only continue to be created and improved so that when we are ready, there will be no hesitation to employing as much technology as available.

Staying aware of the innovations and using technology now will help in the future.

“I want to live near my kids and grandkids”

You know how important it is, as a family caregiver, to be accessible to your senior loved one. You will also want this because chances are your kids will be your caregivers as you are with your parents.

Being near them will be best for you both.

Does that mean you need to move closer to them? Is a family conversation in order to decide if there is a chance they will relocate after you move to be near them making it necessary for you to move again?

Is it possible for you to move in with them and share a household? Does it make better sense to both find a property that allows you both privacy but proximity?

There are many more options now than in the past such as granny pods that can make living together but separately more cost effective.

“I want to have all my legal documents in order now!”

Experts believe that two-thirds of adults have not created legal documents that express their wishes or created a will that dictates where their assets will go after they die.

This situation leaves family caregivers guessing what to do as end-of-life approaches and often stuck in the middle of other family members who try to fight for their piece of the pie.

Executing advance directives, such as a living will or a DNR (Do Not Resuscitate order) before you need it and then discussing your wishes with your loved ones will help make you an informed care recipient and not put your caregivers in a difficult position, as you might feel you are currently in with your own senior loved ones.

Having time to contemplate your wishes, filing accurate documents, and sharing this with those who need them instead of trying to do it all quickly in an emergency will allow you to make the best choices and create action plans, including funeral arrangements, to reduce the stress on your future caregivers.

“I want to downsize and declutter”

You may be struggling with the thought of having to dispose of your senior loved ones’ fifty years of possessions. What is the most important to save, what is worth selling, and what is just junk?

Most of us have piles and boxes of stuff stored that we may not even remember we have. Imagine storing this for many, many years. This is what many caregivers are staring in the face right now.

It makes us realize we don’t want to do this to our future caregivers. Now is a good time to start decluttering the basement and garage and closets throughout your home so you can donate or sell the belongings you have that you no longer need so no one else will have to later.

Depending on your personal caregiving situation, there may be more lessons you learn to help you age more successfully.

Can you add a few to our list?

What would you put on your own list?

The important idea is that we take action when we see a problem that we need to fix for ourselves instead of getting frustrated that your senior loved ones haven’t prepared well.

The time is now to start preparing for your future!

 




Busting the Myths of Hospice Care — Family Caregiver Quick Tip

Too many people are not getting the full advantage of all that hospice has to give to those at the end of life and their caregivers.

The myths surrounding hospice care are obstacles for many, so during National Hospice and Palliative Care Month we will bust some of those myths!

Hospice care is about improving a person’s quality of life as the end of life approaches.

The goal is dignity and comfort and it is a team approach between the person receiving care, the family caregivers and the hospice team — a caring, not curing, approach.

It is important that family members are able to spend as much quality time together with the help of hospice caregivers.

Myths of Hospice — Plus the Facts

There are many hospice myths from years ago that many people still believe to be true.

Here are just a few of them and the facts of how hospice works now:

MYTH: You have to have cancer to be on hospice.

FACT: Any terminal or end-stage diagnosis including COPD, dementia, kidney disease, AIDS, heart disease, etc. can be qualifying for hospice care.

MYTH: You have to go to a hospice house to get care.

FACT: You can receive hospice care in any setting you choose including home, nursing home, hospital, assisted living facility or hospice house.

MYTH: Pain medications given in hospice will kill you.

FACT: Hospice care entails a multitude of comfort measures including pain control, wound care, nursing care, emotional and spiritual support, and nutritional interventions. These techniques don’t hasn’t death but provide a more dignified end of life.

MYTH: You are allowed to starve on hospice.

FACT: All efforts are made through the use of nutrition and hydration for comfort to meet the needs of the person under hospice care as determined by the hospice team and family caregivers.

MYTH: Hospice care is expensive.

FACT: Hospice care is a benefit of Medicare, Medicaid and most private insurance companies. Your senior will not be denied hospice care based on finances if they meet hospice care criteria.

Hospice care helps not only the person at the end of life but also family members by providing emotional support during care and as much as eighteen months afterwards through their bereavement program.

Many people wait too long to gain the benefits of hospice, so if you think your senior would benefit, contact your healthcare provider for a referral or contact a preferred hospice company to seek more information.

Don’t let the myths deny your senior loved one — and the entire family — the benefits of hospice care.

Tips to Know If Hospice is Right for Your Senior Loved One

Your senior loved one might be ready for hospice care if these conditions are present:

  1. They have been diagnosed with a serious illness with a life expectancy of 6 months or less.
  2. Comfort care and symptom management are the desire of your senior loved one.
  3. Curative treatment is no longer possible or it is no longer your senior’s choice.

Talking about hospice and whether this is an option your senior wishes to consider when the times comes is a discussion that is best to have before a terminal diagnosis occurs.

Additional Resources

Here are some more in-depth articles to help you learn more about hospice and palliative care and how it might help your family members.

National Hospice Month – End of Life Benefits for Seniors and Families

When you say hospice, many people either shut down their listening or cringe at the image they have in their mind.

Many people, particularly older adults, have a belief that talking about hospice could mean your life is over.

People die who receive hospice care, I have heard people say.

That is true, of course, but it isn’t hospice care that’s causing death.

The whole point of hospice is to welcome the eventual death facing us all in the most dignified and comfortable manner we can. Family caregivers still provide the majority of care and staff support them in a variety of ways – physically, emotionally and spiritually.

Very few people want to die in a hospital bed if they have a choice. Most people would rather be surrounded by those who mean the most to them, including their beloved pets, their comfortable bed coverings, their own home and the faces of those whom they have nurtured and who continue to nurture them.

This isn’t restricted to older adults, many young people – very young people including infants – can be served by caring hospice personnel in their own home with their family around them.

Hospice Facts

The statistics might surprise many of us.

The most recent facts and figures about hospice care come from 2014 from the National Hospice and Palliative Care Organization (NHPCO).

It is estimated that 1.6 – 1.7 million people receive care under hospice annually.

That number has been happily growing each year as more understand the benefits of the services provided.

By 2007, of those who died with Medicare benefits, 30% received hospice care at the end of life.

The median length of service (time spent receiving hospice benefits) in 2014 was 17.4 days; the average length of service was 71.3 days.

About 59% of people receiving hospice, get the care at their ‘home’ wherever they call home, such as personal home, nursing home or residential center. About 32% received care in an inpatient hospice facilty.

What Hospice Can Mean to Your Senior

Hospice care will provide a variety of services for your senior with the talents of an interdisciplinary team.

  • Pain control
  • Medication management
  • Personal care
  • Assistance with spiritual care
  • Medical supplies and equipment
  • Caregiver education
  • Special services such as therapy (physical, occupational and speech)
  • Respite care
  • Volunteer services

These services can make the end of life a much different experience for seniors and their loved ones.

Hospice Staff Support Family Caregivers

Family caregivers may find that they receive as much or more supportive care from electing to get hospice services for their loved one than they might imagine.

Hospice personnel involve family caregivers in the plan for their loved one. The wishes of the care recipient are paramount but helping the caregiver provide care and obtain resources is also a function of hospice.

Social workers can connect families to resources of which they may not be aware for the benefit of the senior, both now and after their death, such as community services. They provide emotional support along the way and for up to 18 months after the death of your loved one. They are skilled at helping you cope with end of life caregiving challenges and then help you heal after care.

Chaplains can support your loved one’s journey as they make peace with their own life, their family relationships and strengthen their faith to face what the future might hold for them. Chaplains also help family members who might be struggling with the “why me” or “what now” questions that could appear as the end of life approaches.

They can help families make peace with what is coming and help find comfort in after care.

Hospice Medical Professionals

Did you know that there are Dietitians in hospice care that can help family caregivers who are needing more assistance to find comfort in food for their loved ones? There are!

Food is a comfort for most people. We show our love through food – baking, cooking and just watching others eat what we prepare.

This doesn’t change at the end of life. What could change are the amount, texture, temperature and choices of food that your loved one might need to find comfort near the end of life. The hospice Dietitian can help you and your family members with these choices.

Most of us know that Nurses and Nurses Aides are the foundation of hospice care and they provide the hands-on care that family caregivers and senior loved ones need. They can offer strategies for caring for your senior that you might not already know which can make your caregiving journey a bit easier.

These Nurses are shoulders to lean on, ears to vent your problems to, and friends throughout this journey. They understand your concerns and will try to make your experience as a family caregiver better and hopefully lighten your load even a little bit.

Cost of Hospice Care

Most families worry about the cost of hospice care in addition to medical costs associated with a terminal illness. According to the NHPCO, hospice care is covered under Medicare, Medicaid, and most private insurance plans.

People receive hospice care regardless of their ability to pay.

Medicare is the primary payer for hospice care and picked up the bill 85.5% of the time in 2014.

Veterans are eligible for hospice care through the Veterans Administration, which partners with community providers. Many hospice providers participate in a program called We Honor Veterans and serve veterans in need at the end of life.

The numbers in need of this service are great, as 1 out 4 dying people in America are veterans.

Some hospices are learning to best serve the special needs of veterans who have unique illnesses or traumatic life experiences that require a modified approach.  Considerations include location as many are rural (3 million of the 8 million Veterans), different wars or trauma, homelessness, PTSD, or substance abuse.

Electing Hospice Care

Every person who believes that comfort and dignity are important to them as they face their own end of life, whether they are young or old, should put their desires into writing.

This can be done in a variety of ways, such as the Five Wishes (we also discussed it in our inaugural podcast) or a living will format.

Be sure to discuss your thoughts with your family so everyone knows if you don’t want heroic measures taken — clearly define what you consider to be heroic and what you feel you want done — so they will honor your wishes.

Preparing them to act on your behalf is vital!

Depending on your state, there may be specific forms that need to be completed, witnessed and executed accordingly in case of future disagreement among the family. It is important to create them correctly but also important to share them with those involved so that they can proceed on your behalf.

They won’t be written in stone, so if you change your mind in the future, the documentation can be amended.

There are so many options that you can set forth, not just heroic measures desired or not desired but things that will bring you joy such as:

  • Allow my dog on my bed to be with me at the end
  • Keep daisies on my bedside table or keep flowers out of my room
  • Dress me in my favorite pink nightgown and matching robe while I am the end of life
  • Bury me with my grandmother’s ring or cameo earrings
  • Don’t close the curtains, I love the sunshine on my face

These may seem like insignificant or even silly things, but they could make a big difference in the way a person faces their end of life, wants to be seen by others, and keeps their end dignified based on their own preferences rather than what someone else might think they want.

This month is a good time to learn more about how hospice can benefit your senior loved ones, you as a family caregiver, and the rest of the family. It’s a good time to express wishes and communicate desires with the family.

Someday when the pages of my life end,

I know that you will be one of its most beautiful chapters.

~ Unknown

Moving More Than Furniture – Legal Transitions for Relocating Seniors

Seniors in search of a life nearer their kids or grandkids often end that search with a move to a new home.

Finding a home that will meet their needs as they age could mean downsizing.

When seniors are seeking a home that is more manageable, age-friendly, or comes with new scenery, they might find what they want in a different state.

Moving to a warmer climate, one that doesn’t require snow removal to get milk or even just the mail, is often a decision in the best interest of our senior loved one. Being afraid of slipping on the ice can result in isolation to avoid taking chances in the winter weather.

Sometimes living in the Deep South is not the healthiest option either, especially if the family is not nearby. Extreme heat can be just as isolating as extreme cold.

What do we need to think about when we move from one state to another besides the change in the weather?

Moving Changes

When seniors move there are many details that come along with an out of state move that could affect them differently than if a younger person were to move to a new location.

When we move we know that there are many and often frustrating changes need to occur to make us true residents of our new state no matter what our age.

  • Changing our address with everyone we know not just family but magazines, credit card, voters registration and all other places that have our current address
  • Connecting to new providers for water, electric, cable, newspaper and telephone
  • Finding new doctors, dentists, eye doctors, specialists, hospitals and veterinarians that you trust
  • Locating a new church or other faith organization and becoming a member
  • Picking a grocery store and pharmacy that meet our needs and preferences
  • Obtaining your driver’s license and updating your passport and other forms of ID

How about moving changes that are specific to older adults?

Legal Considerations for Moving Seniors

When seniors move from one state to another, many of their legal choices that they have put in writing may have to be updated.

Certain legal decisions have regional rules and statutes that differ from one state to another. It is very important for seniors to get these legal documents updated. You might consider using an elder law attorney who specializes in these state rules and regulations as quickly as possible in case they are needed fast.

Let’s take a look at some of the areas that should be reviewed when senior loved ones change states.

  1. Advance directives – having advance directives, including a living will, trusts, do not resuscitate orders, or power of attorney for healthcare documentation is a fabulous plan. However, various states have different rules about advance directives. If your senior’s forms are not in compliance with the state where they now reside, it could result in lack of desired treatment or healthcare professionals being unable to follow their wishes in an emergency.
  2. Medicaid – This is a government program but run by each state and their governing rules, which vary. If your senior is receiving Medicaid, they will need to meet the requirements of their new state. Federal requirements apply to all states but some state by state guidelines such as amounts of gifts, Medicaid annuities and exemption for personal residences may be different. There may be a waiting list in the new state for coverage.
  3. Executor or Proxy – if your senior has named a person to be their proxy for healthcare or finances or the executor of their will because they lived nearby and now they don’t, it might be time to reassess whether that person is still willing and able to act as executor or proxy.
  4. Financial institutions – it is important that all financial institutions are notified of your senior’s out of state move. This includes retirement plan, IRA’s, CD’s, bank accounts, savings bonds, money market funds, stock ownership, VA benefits, credit union accounts and mortgages. Family caregivers should know where all the sources of finances can be found in case they need to file for Medicaid or VA benefits or any government assistance for their seniors to verify eligibility. If the financial institution does not have the current address, the account could be forgotten and the money lost.
  5. Pre-paid burial arrangements – if your senior loved one has created a burial plan in the state where they were residents but no longer wish to be interred in their former state, they will need to change those pre-paid arrangements and set up a new plan.
  6. Locate documents – when moving out of state it is important to protect all documents (when not stored electronically) that will be needed, such as tax records, vehicle titles, deeds, advance directives, contracts, marriage certificate, military service record, passport, stock certificates, all insurance policies, Social Security and insurance cards, organ donor card, end of life wishes documents such as the Five Wishes or POLST, and divorce papers and keep them safe and accessible for family caregivers.
  7. Safe deposit boxes – it shouldn’t be forgotten to transfer all safe deposit box contents to the new state. Important documents and belongings may be stored here and potentially forgotten if the safe deposit box opened years before is left behind.
  8. Property – if your senior will still own property in another state after they move, they should check with an attorney because there may be rules that now pertain to them with regard to ownership now that they are legal residents of a different state.

Even the most well planned estate and legal documentation will need to be updated when there is an out of state move.

Don’t Risk Shortcuts

Many documents such as advance directives, wills and trusts should be reviewed every few years whether there was a move or not in case laws have changed making those documents invalid.

It is valuable to have your senior’s legal affairs reviewed by an elder law attorney or an estate planning attorney, not just a general practitioner, to be sure they are covered in the event of any emergency or change in their status requiring someone else to step in on their behalf.

When we move, changing the electric or water is the easy part. Remembering to update legal documents and keep track of financial assets may not always be done.

Getting all our valuable and important legal issues updated should be a priority so our seniors don’t lose any assets or invalidate their wishes.

Then they can start to enjoy their new home!

Advance Directives: Healthcare Proxy Selection and Responsibilities

The National Healthcare Decision Day campaign and others encouraging us, including our senior loved ones, to make our decisions known has resulted in many of us executing these documents.

It is estimated there has been an increase of 25% in completion rates for advance directives.

We’re encouraged by that progress!

The more we learn about advance directives and become comfortable talking about them, the more likely it is that we will complete them.

It is important for us to put in writing what we envision to be our end of life and who we want to express our end of life wishes and advocate for us if we are unable to do so.

Our healthcare proxy is an important person in this process.

A Pew Research Study found that only 29% of the population has completed advance directives, sometimes called DNRs, but 70% of older adults have done so. One study found that durable powers of attorney for healthcare were more often completed than living wills.

When we put our decisions or wishes into documents, we are expecting that our wishes will be carried out accordingly.

What happens if that is not the case because there was some kink in the works or a loophole that goes unfilled?

Who Should Be Your HealthCare Proxy?

Your senior loved one’s healthcare proxy or healthcare power of attorney is the person who will advocate for him when he is medically unable to advocate for himself.

When deciding on the best person to be your senior’s healthcare proxy, it is important to consider someone who is willing and able to direct the healthcare team to ensure that their directives are indeed carried out as they wish.

The person could be someone in your senior’s immediate family such as a spouse or child. In the absence of that person, you can empower anyone with this responsibility.

This person will speak for your senior when she cannot, therefore should be someone the senior trusts who knows their mindset about how care should be provided either in an emergency situation or at the end of life.

Advance Directives Legal Documents

When you or your senior create advance directives, including naming a healthcare proxy, it is important to fill out the appropriate document. Each state has a different form and requirements for these legal documents.

You and your senior can complete the forms together or seek help from an elder law attorney specializing in these forms in your state.

Your senior must be considered of sound mind when creating these directives. That is why we encourage them to complete legal documents while they are still clearly legally able to state their wishes and designate a power of attorney for their healthcare decisions.

Be aware that if your senior has not completed advance directives and therefore no one is legally able to advocate for their wishes, the state may step in and make decisions on their behalf that are not consistent with what they would want done.

The right to make decisions for your senior if no one was designated starts with spouse, child older than 18, parent, and sibling older than 18 according to the state’s default surrogate consent statutes.

Designated Next of Kin

If your senior loved one has not designated someone able to carry out their wishes as a healthcare proxy, only immediate family will be able to make decisions for them under the law in most states.

If your senior recognizes someone as the next of kin who is not an immediate family member and has not named them in a living will or other advance directive, that person likely won’t be able to legally direct care consistent with those wishes.

A new study found that one out of ten veterans surveyed picked someone other than family to be their next of kin.

The concern over this new trend is that it could delay medical treatment, leading to poor outcomes for some seniors.

If there is confusion about who can legally make the crucial decisions needed, it could easily delay care. Also, in the absence of a DNR order or other advance directives, a legal next of kin could be asked to make decisions for a person about whom they know little or with whom they have not even interacted for some time.

They may not be involved in or knowledgeable about which decisions the senior would desire.

Who were unrelated next of kin chosen to be healthcare powers of attorney? Many of those surveyed picked a close friend, an unmarried partner, an ex-spouse or a distant relative.

It seems to be a byproduct of a more mobile family dynamic, where we aren’t living in close proximity to our immediate family members.

This raises a question whether the statutes should be modified to take into consideration a more diverse ‘family’ situation. Before that happens, however, we all should be creating our own advance directives and naming the person we feel is the best fit so that a surrogate is not needed. This will reduce confusion about who should make decisions in an emergency and insure that only the person who knows your desires best to make decisions for you.

Decisions a Healthcare Proxy May Be Asked to Make

It might be of interest to those of us who may need to select a healthcare proxy to understand what they might be asked to do so that we can make an informed choice about who to pick.

In the event of a medical emergency, when your senior is unable to express his or her own wishes or decide for himself or herself what should occur, the designated healthcare power of attorney will decide some of the following medical or health related questions:

  • What treatment you should or should not receive including artificial nutrition or chemotherapy
  • Whether life support or heroic measures should be taken or stopped
  • When to give or not give pain medications
  • To which facility you will be transferred
  • Whether or not surgery or other procedures will be performed
  • Should you be resuscitated?
  • Authorize care by other physicians
  • Apply for Medicare or Medicaid or other insurance benefits on your behalf
  • Right to pursue legal action on your behalf regarding health decisions
  • Approve release of medical records
  • Inform family members of condition

That’s a lot of responsibility to place on a person, which is important to know when one’s proxy is being determined.

A healthcare power of attorney cannot make decisions about issues that are not health related.

A proxy should be aware of your senior’s wishes and medical intent so that they can act with full understanding about your wishes and the potential outcomes of the treatments recommended by the healthcare team. Should they be life sustaining at all costs or within reason based on quality of life concerns?

The healthcare proxy needs to have an honest, open discussion with your senior about these matters so that they can make the best decision when the time comes.

Review Advance Directives Periodically

Just because your senior is completing advance directives now doesn’t mean they can’t be changed later. In fact, it is a good idea to review advance directives from time to time to be sure they are still appropriate as written or if they should be updated due to different circumstances, such as divorce or death — or a change in desired wishes.

Perhaps your senior’s stated proxy is now unable to act on her behalf. Maybe the person chosen as the proxy has decided they no longer wish to be the proxy due to health issues, location or time considerations.

Keeping these documents up to date will be important when an emergency requires their use.

Whether your senior has made an advance directive or not, as long as she is able to speak for herself, she will be the one asked to make decisions.

A healthcare power of attorney will only be asked to step in for you when you are unable or incompetent to make your own healthcare decisions.

It is important to make these documents according to the laws in your senior’s state, pick the most worthy person, educate them about medical wishes, and let everyone know what you have decided.

Keeping the advance directives accessible and all the family informed will make it much easier for everyone involved, including the doctor and emergency personnel, so your senior’s wishes will be followed and they will receive the most appropriate medical care, consistent with their wishes.

Do Not Resuscitate (DNR) – Do We Avoid Acting Because Term is Scary?

Most of us tend to put off things we don’t really want to do, even if we know they really need to be done.

Procrastination is human, but in this case risky.

We need to encourage our senior loved ones to execute their healthcare decisions, known as advance directives or DNR, and then make them known to important people in their lives.

Then we need to do the same for ourselves.

We should have those decisions written in a legal way and shared with those closest to us, including our healthcare team. This is something upon which we all agree, no matter what decisions you make or how long you have put it off already.

The number of people who have formally stated their wishes and made them known is rising, not just in the United States but also across the globe — but there are still too many of us who have not done so.

Did you know that only about one third of the general population has completed advance directives, even though these forms are free, straightforward, and easily available?

Advance directives empower individuals to manage the final chapter of life in a dignified manner and according to their own values. If advance directives are not completed, if there has been no conversation to express end of life wishes amongst the family, the result is often medical intervention that can be painful and without dignity when ‘doing everything’ is the only course.

Even if proper advance directives have been executed, if those closest to you aren’t aware of them, they could potentially not be followed as you would like.

What are Advance Directives?

A Do-Not-Resuscitate (DNR) order means that you or your senior loved one opts not to receive cardiopulmonary resuscitation in the event that the heart stops beating. DNR orders cover failure of the heart to beat, in which case CPR or chest compressions are typically performed in an effort to assist the heart beat and force the blood to be once again pumped to vital organs.

Many agree that CPR needs to be withheld if the person involved wishes it to be held. In addition, if the medical team agrees that CPR will be ineffective or has limited potential to benefit the person, life saving measures that could cause further harm should not be performed.

Put another way, will CPR benefit a person if their quality of life is so poor that meaningful survival is doubtful even once the heart resumes beating? This is a decision your loved one, doctor and family should discuss, especially if no written advance directives are in place.

Having a DNR order does not mean that you will not be treated for your medical issues nor that you have given up all desire to live, but that you feel that performing CPR won’t give you a desirable outcome, a good quality of life.

It is important to differentiate between a DNR order and a living will. The rules governing advance directives vary from state to state. It is prudent for you to check with a professional or agency in your state to be sure that the documents your senior has are valid in their state.

Dangers of CPR for Elders

Seniors nearing their end of life or even in the midst of a medical crisis are fragile. As often occurs, broken and cracked ribs are a result of CPR.  Frail, brittle bones crack with each chest compression.

If CPR is “successful” in that it revives our elder, he or she can endure pain and confusion that may last for the rest of his or her life. Oftentimes their life is prolonged for merely hours, days or weeks.

The statistics are grim:

  • about 15% of healthy people who have CPR in a hospital will survive;
  • 1-2% of elderly people will live past CPR performed in the hospital and go home;
  • many of those who do go home after hospitalization have significant lasting medical effects such as brain damage; and,
  • The statistics are worse for CPR performed outside a hospital.

This is not to say CPR is bad or everyone should have a DNR order in place, just that it is reasonable to consider if one wants CPR performed.

Whether or not one wants lifesaving procedures performed is, after all, a personal decision. There are many factors that might go into personal considerations.

Why Should We Make Our Wishes Known?

Besides the potential for further pain and suffering when our senior loved ones might not reap great rewards with desired quality of life, many prefer to die with the same dignity they lived their lives. They choose to allow the natural course of their life and failing bodies to unfold without the lifesaving measures that could keep them alive without dignity or quality of life not to mention further disability.

Most seniors have a view in their mind of their own end of life. They may have expressed it verbally to members of the family and may already have had lawyers prepare the documents.

Some older adults are fearful of talking openly about the subject to those they love because they don’t want to cause them pain. There may be fear that speaking about it will cause untoward events to occur.

If they don’t bring it up, you should. Ease into this discussion but handle it in such a way that shows your love and concern for them.

In the case of natural aging, we can often see our senior loved ones declining and know that they may not have many years ahead. This is a good time to be sure there are documents completed and a discussion is had by all. Unfortunately, in the case of a crisis such as an automobile accident, a fall with head trauma, a stroke or another medical emergency it may be too late or impossible to make wishes known.

We never know when the need could occur, so we should be ready now.

This is not just for your senior loved one but you as family caregiver as well. Planning for how and who will take over your caregiving duties is vital for your senior’s well-being in the event of an emergency involving you.

Would Another Term Be Less Scary?

Many across the healthcare field, especially those who deal closely with end of life issues, have started to use the term “Allow a Natural Death” (AND) instead of DNR. They feel that this term is more agreeable and clear in its intentions. We all want our loved ones and ourselves to have a peaceful and natural death.

In Texas, for example, they are using the term AND to open family discussions of end of life care with better understanding and outcomes.

Discussing resuscitation in terms of the damage it can cause if performed does not paint a very comfortable end for many. The opposite of having a natural death is having CPR performed.

Because this is a deeply personal decision for your senior loved one and even you, careful consideration with all the necessary information to make an informed decision should be taken.

No matter what decision about end of life care is made, it is recommended that you keep a copy of all advance directives, especially a DNR, POLST or Comfort Care DNR form attached to the refrigerator so that everyone can have access during a crisis especially first responders. Your senior’s doctor should have a copy and members of the family.

Don’t keep anyone in the dark, it could lead to disagreement when the time comes it is needed and ultimately lead to the wishes not being followed.

As we plan for our end of life, let’s make each day a reason to celebrate. Here is an important reminder for us all!

Top Five Regrets of the Dying

  1. I wish that I had let myself be happier.
  2. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  3. I wish I hadn’t worked so hard.
  4. I wish I’d had the courage to express my feelings.
  5. I wish I had stayed in touch with my friends.

Source: Guardian News Report

Understanding Hospice & Palliative Care: Are They for Your Loved Ones?

Let’s celebrate knowing how you want your end of life to be and participating in Hospice and Palliative Care services available to us all when the time comes during National Hospice and Palliative Care Month.

Don’t know what Hospice and Palliative Care means? Think hospice hastens death? Think people are drugged when they are on hospice?

It’s time to clear up the myths and see the real benefits people especially our senior loved ones can gain from participating in end of life care.

There is a new report prepared by the National Hospice and Palliative Care Organization (NHCPO) in 2014 called NHPCO Facts and Figures: Hospice Care in America that details the latest trends in end of life care. In fact, it is estimated that 1.5-1.6 million people received hospice care in 2013 but many more could have benefited.

What is the difference between Hospice and Palliative Care?

Hospice is a model for care for people at the end of life. It supports not only the patient in need but the family caregivers too. It provides medical care, pain control and emotional/spiritual support. It is a supportive process not a curative one so you are expected to be within six months of death.

Hospice care can be provided in the home or nursing facility, such as nursing home or hospital. Two thirds of hospice care takes place in the home. There are hospice houses that admit patients near death in an environment suited for comfort.

When not in a facility, the staff of hospice is on call around the clock, seven days a week. Regular visits are made by members of the team including nurses, aides, social workers, chaplains, volunteers, therapists and dietitians.

Palliative care is slightly different than hospice. According to the NHCPO, palliative care “is patient and family-centered care” in which quality of life is optimized through “anticipating, preventing and treating suffering.” They treat “physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice”.

The main difference is that curative or life prolonging care can be given. It is the same as hospice with its primary goal being to maintain comfort and provide comfort through the expertise of a multidisciplinary team and can be provided in home or a facility.

Myths of Hospice Dispelled

Many people, especially older adults who have experienced family members over the years in the final days of their lives, have perceptions about hospice care that are no longer true. They may have been true at one time, but no longer.

Let’s look at some of these myths.

  • Only people who have cancer use hospice. Many people in the past who received a diagnosis of cancer discovered that it was a terminal condition. Today, large numbers of people diagnosed with cancer are survivors. In fact, cancer diagnoses in hospice made up only 36.5% of those receiving hospice care. Cancer deaths overall account for only 25% of US deaths. The top diagnoses for those receiving hospice care are dementia, heart disease, lung disease and debility.
  • Hospice care is expensive. Medicare has a hospice benefit as part of its plan. Every older person who uses Medicare is covered for hospice care if desired. Currently about 30% of those on Medicare who die were in hospice care. According to the report, “hospice care is covered under Medicare, Medicaid, and most private insurance plans, and patients receive hospice care regardless of ability to pay.”
  • You have to be near death to need hospice. In fact the average length of stay for a person receiving hospice care was almost 73 days in 2013. Not only that, but 11% of those receiving hospice in 2013 remained under their care for longer than 180 days. The median number of days that hospice care is provided during that time was 18.5 days.
  • You have to die at home when you are in hospice. You can choose to die in the comfort of your own home surrounded by your loved ones or you can choose to be in a facility. Some people wish to have the safety net of a nursing facility when the time comes. It depends on your wishes.
  • Only adults can get hospice care. Any age person who qualifies for comfort care can receive the benefits of hospice care. 1% of those who were treated by a hospice program were kids (pediatrics).
  • People are “drugged up” and die faster when they are in hospice. The main goal is to provide pain management and comfort for those who opt to receive hospice care. Today’s hospice professionals maintain dignity of the person for whom they care. There are many medications or other non-pharmacological interventions that are used to provide pain management. Treatment is based on individual needs and under the direction of the patient himself or family caregiver. Hospice does not speed death or prolong it but allows the person to remain comfortable and pass with dignity. The illness progression is what causes death not the medication a person is given.
  • I can’t keep using my doctor. Most hospice care providers work with your personal physician. There may also be a medical director working with the hospice provider that oversees the healthcare team.
  • No one survives hospice. You might be surprised that people actually survive hospice and leave the program. Sometimes there is an improvement in the medical condition of the person in hospice and therefore if you no longer qualify for hospice, you can be released. In the future, if the person has a medical decline, they can be readmitted to hospice care.

Services Provided by Hospice

Hospice programs provide many services. Each member of the team brings special expertise to help the person under their care receive the best treatment.  Care is dictated by the wishes of the person receiving care and their family caregivers.

  1. Pain management
  2. Symptom management
  3. Emotional and spiritual support
  4. Medications, equipment and supplies provided
  5. Visits by nurses and nurses aids
  6. Teaching of patient and family members
  7. Volunteers
  8. Social service support
  9. Respite
  10. Bereavement counseling

Naturally, whether you and your senior loved one decide the time is right to consult with a hospice or palliative care organization will be a difficult decision to make. It helps if your senior has advance directives in place or documented his or her wishes in a form, such as the Five Wishes, to guide you. This will help direct you on what type of care they desire when end of life is imminent.

You should discuss with your senior’s doctor the possibility of hospice care and when it would be appropriate to begin because often times, senior’s will qualify for this special care but elect to participate too near the end when they could have benefited much sooner (and you as a caregiver).

“I’ve told my children that when I die, to release balloons in the sky to celebrate that I graduated.For me, death is a graduation.”

Elisabeth Kubler-Ross

Where There’s a Will There’s a Way & That Way is the One We Designate

Where there’s a will there’s a way is something we’ve all heard, but this time we’re looking at it differently and referring to a last will and testament.

We all should be thinking about executing a will if we haven’t created one yet, but it’s especially true for our seniors and us as their family caregivers. It is important for them to leave directions for their loved ones, friends and family members who meant so much during their lifetimes.

It is a good idea to let it be known in writing in your senior’s own words who and where he or she would like their possessions and assets to be handed down. Does sister get the good china and brother get the car in the garage? Who will receive the cash in the bank? Who gets the house and all its contents? Who will take over the care for their beloved pet?

Making your senior’s wishes known with regards to their personal possessions will be a great gift to everyone when the time comes and it is needed.

Having everything in writing can also prevent family squabbles about your senior’s belongings. It often happens that at the peak of grief, everyone wants a piece of the senior ‘to remember them by’. Having specific directions can avoid the arguing and hurt feelings.

Having a proper will also leaves loved ones with the knowledge they have followed the wishes of the loved one who has passed.

Unfortunately, an estimated half of all adults do not have a will in place.

Last Will and Testament

Not exactly sure what a will would cover so that you can guide your senior into executing this valuable document?

A will is written in such a way to direct exactly who gets what in terms of possessions and assets. There is an executor that is named by the person making the will. The executor is a trusted individual, it doesn’t have to be a family member, who ensures that whatever is written in the will actually happens according to the wishes of the person.

A will can also outline what intentions the senior has regarding donating money or possessions to their favorite charity.

A will can detail who and how a person might want the care of another person, such as a dependent spouse or disabled child, to be performed.

It can establish trusts for specific members of the family. It can also detail who the person does not want to give anything to after their passing.

Having a will in place will make the process go more smoothly and perhaps even more quickly when the desires of the person are clear and the taxes or other fees are defined.

Dying Without a Valid Will in Place

There are many consequences of not having made a will. These are just a few to consider.

  • Naturally, not having a will in place when the time comes that it is needed can lead to family disharmony. When no one really knows who gets what, when some want more than others think they deserve, when some take without asking or when treasured objects can’t be shared, families can get into arguments that can lead to legal action and even a lifelong fracture between the family members.
  • When there is no will, called an intestate estate, probate action will take longer and an outsider who did not even know your senior loved one may end up making decisions regarding their possessions.
  • There may be instances when taxes and legal proceedings eat away at whatever is left. The government may be obliged to step in to protect their own interests. Probate court will take over whatever payments or expenses your senior leaves behind and then divides up the remainder of the estate. There is a specific family tree that the probate court will follow to hand out the assets whether this is what the senior wanted or not.
  • If the probate court can’t find family members, the entire estate may pass into the hands of the state or local government with no family getting the assets. An intestate estate typically incurs heavy taxes.
  • If there is no executor named or the one named is unable to carry out the duties required, the probate court is forced to name one, possibly somebody who never knew your senior or their wishes.

Making a Last Will and Testament

So your senior loved one has decided that the time is right to make a will and maybe you will make your own will too. Actually every person of legal age should create a will in the case of emergency.

Here are some tips for you to get going.

One key for family caregivers — it is vital for you to make your own will as a caregiver with your expressed wishes known about what you intend to happen to your senior loved one if you are no longer able to be the caregiver. You can spell out where the senior will live, who will pay for their needs and how you expect them to be taken care of to avoid future issues or neglect of the standard of care you have established.

  1. We are not lawyers and are not giving legal advice, so if you have questions or are uncertain about the right steps, we suggest that you seek the advice and counsel of an elder law attorney who can guide both your senior loved one and you as the caregiver. This certified professional can also help them explore all their options and counsel them on having the most effective family discussions so that everyone is aware of the plan your senior has put in place. This might avoid future conflagrations when everyone is fully informed. You can create a will that is not too complex online but be careful that you are extremely clear on what is desired before you begin.
  2. Your senior loved one should be of sound mind in order to execute a legal will so don’t delay. The senior should be following their own wishes and not another person who might be creating pressure or a state of duress for the senior.
  3. Your senior’s will should be signed and witnessed by usually two but may be more appropriate persons, depending on the laws in your state and these laws do differ from one state to another. Be aware that, in some states, if the witness also is listed in the will it can cause them to be disallowed from inheriting.
  4. If you want to learn more about restrictions in your state and more about wills in general, you can visit the American Bar Association website.
  5. Wills can be revoked, either partially or fully, and rewritten. Be sure that the correct copy is available to the probate court when needed. Be sure that the partially revoked section makes it clear that the rest should still be considered in effect and not canceling out the entire will.
  6. When properly executed, a will is one of the most iron clad contracts in existence. Therefore, be sure it is done correctly and fully explains the wishes of your senior loved one (or yourself). No one wants the pet or the mail carrier to get everything — and for intended loved ones to get nothing — because something wasn’t done correctly.
  7. Instructions for funeral services or burial specifics can be included in your senior’s will but should also be kept separately so that they can be found and followed when they are needed and not locked in the safe at the attorney’s office on a long weekend.
  8. Changes should be made to a will whenever there are events that warrant it, such as death of a beneficiary or executor. If the senior or you become widowed, married or divorced, the will should be updated. If a major change in your senior’s assets occurs or there may be a tax benefit to do so it would also be a good time to change the will. If your senior simply decides to change the way property is divided, disinheriting someone or to give to a charity, he can change the will at any time. A will can be changed with a revocation and a new will or by adding a codicil to an existing will.

There are many other important documents that your senior and you should be sure have created and filed appropriately including advanced directives, trusts and powers of attorney.

The sooner this is done, the more peace of mind the entire family will have and future problems can be avoided.

Ensure things go the way they’re intended by documenting them in a will!