Advantages and Disadvantages of Hospice Care

This week, I am discussing hospice care. I’ve talked about what it is and isn’t and what it does and does not do. In addition, yesterday, I discussed some of the myths and misconceptions of hospice care. Today, I’ll discuss some of the advantages and disadvantages of utilizing hospice care.

First the advantages:

Advantage One
I think one of the biggest advantages of utilizing hospice is that it means that the patient and family are coming to grips with the reality that they are dealing with a “terminal illness.” As stated in another post, it doesn’t mean that life will end tomorrow or the next day, but choosing to enter hospice means that there is a realization that you are no longer actively attempting to cure the disease. Instead you are attempting to provide quality unconditional comfort and support to the patient and his or her family. Which leads me to the second advantage.

Advantage Two
Hospice is one of the only insurance benefits that specifically addresses the needs of the patient AND the patient’s family.

Advantage Three
Hospice care addresses the needs of the whole person. It responds to the physical, mental, emotional and spiritual needs of the individual. Hospice personnel have been known to help mend broken relationships and listen to a myriad of secrets and “confessions.”

Advantage Four
Hospice utilizes the team approach to care. Every hospice patient and family has a doctor, nurse, social worker, chaplain and possibly a volunteer as well. So, there is a constant evaluation of the patient and his or her needs at any given time.

Advantage Five

Hospice employees and volunteers are specialists. They understand the issues related to providing the best quality of life possible. They may understand various stages such as refusing food, withdrawing, etc. a little more than other medical professionals.

Advantage six
In many cases, the patient can remain at home surrounded by family and friends.

Advantage Seven
Hospice is a much less alternative to staying in a hospital or long term care facility.

And now for the disadvantages:

Disadvantage One
The first disadvantage goes along with the first advantage. The realization of the inevitable. Sometimes patients are just not ready to accept the fact that they are “eligible” for hospice care. In some cases, admittance into hospice prior to the patient being “ready” may lead to down spirits, depression and a defeated attitude.

Disadvantage Two
Because of the complete nature of hospice care, the home is “invaded” as it were by caring specialists. If a patient or a family is extremely private, it can take some getting used to to have consistent visits from the hospice team.

Disadvantage Three
“Outsiders” who are not educated regarding hospice may believe that the end is closer than it really is because of the myths and misconceptions surrounding hospice.

Disadvantage Four
Depending on the configuration of your home, it may be difficult/cumbersome to have a set up that is comfortable. So, you’ll have to consider if you have space (if needed) for a hospital bed and other equipment.

In my humble opinion, the advantages outweigh the disadvantages. More than anything, it’s a mindset. Again, it is a personal decision and one that will have impact long after your loved one is gone. I chose hospice for my mom. However, because I had not PLANNED or thought about it in advance, it was very difficult because I was not informed and I was afraid of the myths and misconceptions. I even had well-meaning medical personnel attempting to provide “comfort” that, as we discussed yesterday could have actually made my mother more uncomfortable.

That’s why, it is so important to read, research and even talk with patients who are utilizing hospice care and their families prior to making a decision. Maybe, the question isn’t whether or not you go with hospice (although, I think its a good choice), but whether or not you have carefully considered it as an option.

So, friend, as you battle Alzheimer’s disease, consider an option that will provide support and comfort for yourself and your loved one.

(Thanks again to the crew at Trinity Hospice - Pittsburgh. Not only did they provide awesome care for my mom, they continue to support me!)

Tomorrow - A Recipe For Life!

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Myths and Misconceptions About Hospice Care

The word “hospice”conjures up all kinds of pictures in peoples minds.  From halloween costumes and horror movies to more serious images; people are often afraid of hospice.  

So, let’s take a candid look at what hospice is and is not.  We’ll talk about what they do and don’t do.  Most importantly, I’ll examine the myths and misconceptions surrounding hospice care.

Myth #1

Hospice means impending death--According to the Medicare benefit (part A) a physician can recommend hospice care for a patient if the physician believes that the patient “probably” has six months or fewer to live. 

Truth:  Hospice employees and volunteers have reported patients living for two to three years while receiving hospice care.  In fact, according to Trinity Hospice Chaplain, Cindy Vogel, “Hospice care can actually increase quantity and quality of life because of the team approach and attention to the well-being of the whole person-physical, mental, emotional and spiritual.”  

Myth #2

Morphine as a method of pain management ultimately causes death to occur more quickly.

Truth:  According to the Hospice Foundation of America–”Morphine does not initiate the final phase of life or lead directly to death.  Morphine provides not only relief of severe, chronic pain; it also provides a sense of comfort. It makes breathing easier.  It lets the patient relax and sleep.  It does not cloud consciousness or lead to death.  Morphine does not kill.” 

Myth #3

Hospice supports and causes –Death by starvation and dehydration 

For those who have done a little research into hospice or have some indirect experience, this is probably the single largest issue. And understandably so.  No one wants to feel as if they are starving or dehydrating their loved one to death.  So, I’ll take a little extra time to examine this issue carefully.

Truth:  When people begin actively dying one of the things they do (voluntarily) is stop eating. This is part of the body’s way of shutting down and preparing for death.  For those of us who experience hunger pangs just a few hours after a meal, we cannot imagine withholding food and water from someone.  Yet, according to the Hospice Foundation of America, “The withholding of food and fluids is not painful.  To the contrary:  the administration of food and fluids to dying persons can extend their general discomfort and frustrate their desire to just let go and allow nature to take its course.”  

However, the REAL issue regarding the withholding of food and fluids is what does our loved one experience?  Again, we can’t bear the thought that our loved one is feeling hungry or thirsty and thinking, “Why don’t they feed me?”  According to WebMD, “There is evidence that avoiding artificial nutrition and hydration contributes to a more comfortable death.”  The article goes on to say that, “Caregivers have observed that symptoms such as nausea, vomiting, abdominal pain, incontinence, congestion, shortness of breath….decreased when artificial nutrition and hydration were discontinued, making the patient more comfortable.

This is another very difficult and personal decision.  One that is more easily made before the time comes.  Don’t get me wrong, it is still a difficult decision and you will probably second guess yourself and want to be sure you are doing what is best.  You will probably review the information and have more questions, but just having gone through the thought process once and having come to a decision will make it easier when the time comes to implement the whatever decision you have made.

(Special thanks to Bonnie Holland and Cindy Vogel at PA Trinity Hospice for providing information for this post.)  

Tomorrow, we’ll talk about the advantages and disadvantages of placing your loved one into hospice care.

Keep your eyes open and get your cameras ready, it’s coming soon…..Caregiver or loved one Photo of the Week! 

 

 

 

 

               

What is Hospice Care?

As your loved one comes to the end stages of Alzheimer’s disease, you will have to make some very difficult decisions. Over the next few days, I’m going to talk about hospice care, what it is and isn’t. The myths and misconceptions, the advantages/disadvantages of getting into hospice and explain some of the services provided under the hospice benefit. First, a definition from Hospice Foundation of America.

Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.Most people are not aware that hospice care is a benefit of Medicare Part A. Some hospice workers refer to it as “Medicare’s best kept secret.” Please see my post entitled Medicare Made Simple for more information about Medicare. According to the Department of Health and Human Services here are some important facts about hospice care:

Hospice provides comfort and support services to people who are terminally ill. It helps them live out the time they have remaining to the fullest extent possible.

Hospice care is provided by a specially trained team that cares for the “whole person,” including his or her physical, emotional, social, and spiritual needs.

Hospice provides support to family members caring for a terminally ill person.

Hospice is generally given in the home.

Hospice services may include drugs, physical care, counseling, equipment, and supplies for the terminal and related condition(s).

Hospice isn’t only for people with cancer.

Hospice doesn’t shorten or prolong life.

Hospice focuses on comfort, not on curing an illness. Choosing to place your loved one in hospice care is a very personal and important decision. Although you can make the decision ahead of time, in order to receive official hospice care, a doctor will have to certify that the patient “probably” has six months or fewer to live. I personally know of people who were in hospice care for 18 months or longer. It’s not necessarily a case of, “there’s nothing else we can do.”

Rather, hospice IS the something else, the something more that can be done. It is also important to note that you can get OUT of hospice at any time if you are not happy with the service or if health improves.Yes, at its core, hospice is about the end. But its about facing the end of life surrounded with family and with honor and dignity.There are many myths and misconceptions about hospice that I’ll talk about in detail on tomorrow.

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Advanced Directives and Living Wills

When we were kids, we used to put our hands over our ears and hum loudly or say, “I can’t hear you.”  It was our way of telling the other child who was speaking that we were not interested in, and would not listen to whatever they had to say. 

Then there’s my youngest son.  He covers his face with his favorite blanket.  That’s his way of “hiding.”  He figures, if he can’t see me, then I can’t see him.

What’s the point?  I’m glad you asked.

The point is that, we adults do the very same thing. We act as if not talking about end of life issues will keep us from having to deal with them.  We put our proverbial hands over our ears or blankets over our heads as if to declare, “I can’t hear it and I can’t see it, so it must not be. ”

This is a sensitive subject for me, as neither of my parents made their wishes clear.  Neither had living wills or Advanced Directives.  So, I was forced to make some very difficult decisions in both cases.

When it hits you that you have very little time with someone you love very much, the last thing you need to layer onto that very difficult time is more questions.  Especially questions that can, at least to some degree, be handled in advance.

Making a decision now will help to keep peace.  Grief impacts everyone differently.  Some people would rather have their loved ones alive no matter what.  Others can’t bear to see them suffer. Take that burden off of them. Make your wishes known, in writing.

What is an Advanced Directive?

An advanced directive is simply giving directions (in advance) regarding end of life issues.  Thinking about the end of life BEFORE it comes.  Advanced directives can be verbal.  Certainly not the best, but it does make the decision making process a little easier if someone can remember what a person said.  A Living Will is the best.  Click here for a sample of a living will.  It’s a written, legal document that explains your wishes regarding tube feeding, dialysis, invasive procedures, living for an extended period of time on a respirator, etc.  I’ll discuss Do Not Resuscitate (DNR) orders in a seperate post.

So, whether or not you have Alzheimer’s disease, whether you are sick or healthy, do yourself and the loved ones in your life a favor.  Take your hands off your ears and the blanket from over your head.  Please, do a living will and encourage your loved ones to do it too.