Hospice Experiences

In response to Joy Johnson’s article

Challenges of dying at home, revisited — The Memories Project

When I worked as an Assessor at the Area Agency on Aging, I heard only rave reviews about Hospice Services.  Our own family experience, which I write about in my book What to Do about Mama? was also positive. 

A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.

What to Do about Mama? p 170

Families often overlook or do not consider hospice when they feel they don’t need it yet. “There is a tenacious and lasting perception that hospice comes in only when people are on their deathbeds. Of course, hospice does take care of dying patients, but that is certainly not all it does. Hospice also helps caregivers by providing home-health aides. It gives emotional and spiritual support to the family as well as to the patient. Hospice loves to come in and help people enjoy everything they can do in life.

What to Do about Mama? p 170

However, all circumstances are not the same.  My daughter-in-law’s mother passed away surrounded by family.  Her husband, sister, and children all pulled together and shared the responsibility for her care, augmenting the services hospice provided.  Her wishes were honored and she spend as much time with family as she could.  I was told that when she died, there was a smile on her face.  I suppose you could say that her death was about as good as a death can be. But this family communicated openly and confronted death according to their mother’s wishes.

 My son-in-law’s (SIL) mother also had hospice services at home.  But there had been more denial and less opportunity to let her wishes be known. 
(See previous blog: The We Don’t Need It Yet Phenomenon)

Hospice had brought in a bed so SIL’s Mom could sleep in a room downstairs.  During the night she got up to go to the bathroom and fell.  She had no hands-on-help because her husband was sleeping in the bedroom upstairs.  The next morning the hospice nurse sent her patient to the local hospice facility—to be more safe, I presume. This is not the place she wanted to be, and she passed away soon afterward.    

Talk about it beforehand. You won’t regret that you did.

A Controversial Issue Worthy of Comments

The following article was written by:  Carol Bradley Bursack, Expert Author, speaker, columnist and eldercare consultant and was taken  from AgingCare.com, http://www.agingcare.com
Home » Caregiver Support » Tough Issues » Articles » Assisted Suicide and Elders: How Far Would a…

I have included the entire article as an addendum to my original post:  The Conversation Project from 2-11-14.  At a later date I added a comment to that post, which, I suspect, got “lost in the sauce,” so to speak.  The comment was about the court case against Barbara Mancini, referenced in Bursack’s article below:

Assisted Suicide and Elders: How Far Would a Loving Caregiver Go?

Assisted suicide—illegal in all states except Oregon, Washington, Montana, Vermont and New Mexico—has recently been in the news because of the court case against Barbara Mancini.

Mancini is a Pennsylvania nurse who was accused of helping her father, 93-year-old Joe Yourshaw, commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die.

Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.

What if?

My mother, during her last two years of agony, would often a look at me as say, “Can’t you just give me a little black pill? “It was obvious to me what she meant and, of course, all I could say was that I couldn’t do that, but I would do everything possible to aid her comfort.

Yet, her pleading nearly broke my heart.

Mom had some mild memory loss at the time, but not Alzheimer’s disease or severe dementia of any kind. I had the Power Of Attorney over her health, though my whole family was consulted on all important issues. Early on, Mom had opted for a do not resuscitate code and, as a family, we supported her choice.

It wasn’t until doctors determined that Mom would likely die within six months that she was able to receive hospice care, which then opened up opportunities for better pain relief. I will always remain grateful to hospice for my mother’s improved quality of life during her last months. When her time came, Mom died peacefully and with dignity.

What if I couldn’t have secured hospice care for Mom and she had continued to beg me to free her from pain? What if I had the legal option that would enable me to honor her request? It was obvious that she was slowly dying anyway. Would I have helped her by supplying medication that she could, at will, use for a lethal overdose?

I’m not certain what I would have done, and I am grateful that I didn’t have to make such a choice.

I do know that years earlier, when she showed signs of colon cancer, I respected her wish to not take the tests any farther. She rightly told me that she couldn’t withstand the tests, let alone the surgery, so she didn’t want to do anything.

I simply said, “Whatever you want to do, Mom, I’ll support you,” and that’s what I did. She lived over seven years after that conversation, much of it in excruciating pain from various causes. Her dementia worsened as well. I’ve never had regrets about supporting her choice.

Whether or not her life was more painful or less so because of her decision, we’ll never know. She may have died years earlier on the operating table, or she may have had the surgery and lived with less pain those last years of her life. All I know is that she made her decision and I supported her. The whole family did.
When I think of what people must go through to be certified to legally accept help in dying, I’m not certain that she had the energy to go through that process, even if it had been lawful at the time.

A difficult decision, and a long process

In most states where assisted suicide is now legal, the person wanting to die must be interviewed by multiple psychiatrists and, of course, already be within a certain closeness to death. It’s not an easy process.

It’s also not likely an option for people with Alzheimer’s or another dementia since, by the time the disease brings them to the brink of death, they would no longer be legally qualified to make such a decision, due to their brain disease.

Even if people with dementia leave their designated Power Of Attorney for healthcare with specific instructions to help them commit suicide once they reach a certain stage, the ill person would no longer qualify for legally assisted suicide at that point, since dementia would be deemed to be clouding their judgment.

Some cancer patients, those with ALS (Lou Gehrig’s disease) and others who have diseases that will bring certain death, but won’t cloud their judgment, may consider the choice to end their lives at an earlier stage than natural death would allow. The point of the law is to mandate whether or not a chosen person can assist them by supplying the means.

Hospice and healing

In most cases, hospice care erases (or at least makes bearable) any physical suffering, though there are exceptions.

Hospice, however, does much more than just assuage physical pain. The program also offers spiritual counseling for the dying person and support for the family. This assistance can sometimes bring even splintered families together during this transitional time. While I’m aware that some hospices are better than others, my support for hospice is unwavering.

Sadly, as in the Mancini case, it’s not just physical pain that may exceed the ability of hospice to control, but the emotional and mental stress that, for some people, is too much to bear. That is when—I would imagine—assisted suicide becomes a consideration for some.

What happens after death?

In my opinion, some of the emotional turmoil about assisted suicide stems from each person’s perspective on what death is. If a person feels that the end of physical life is the end of everything, it seems to me that it would be harder to die than if a person believes, as I do, that the spirit lives on.

Obviously, I have not personally been in this spot, though I may one day face such a dilemma. What would I want my loved ones to do? My healthcare directive is clear that I don’t want to be kept alive under extreme circumstances. However, I wouldn’t want my loved ones to have the burden of deciding whether or not to help me commit suicide.

Just what is assisted suicide?

Assisted suicide is not euthanasia. The person assisting is providing the means, but the patient commits the act that takes his or her life. Still, assisted suicide is, by definition, assisted. Someone, be it a physician, friend or family member, supplies the dying person with the requested method used to commit suicide.

How far should a caregiver go in supporting the wants and needs of a beloved spouse or parent – or even their child – when the requested support may hasten death? The answer to this question will be debated for years, and no doubt more court cases like Mancini’s will be heard.

To some, Barbara Mancini is a hero for following her father’s directions and giving him his bottle of medication. With that in hand, he could decide when and if to commit suicide. To others, she is a criminal because she didn’t protect him from himself.

I suspect few people consider these issues more than those who care for suffering loved ones nearing death.

What would I have done in answer to Mom’s plea if hospice care hadn’t been enough for her and assisted suicide had been legal? I don’t believe I could have given her the means to die, but I can’t say for sure. I’m thankful that I didn’t have to decide.


Susan Diamond’s blog entry “When Aging Parents Can No Longer ‘Do.’ Ways To Empower So They Can Continue to ‘Do.'” is about empowering aging parents:  http://helpparentsagewell.com

I’d like to share a few more examples of empowering aging parents.  When my MIL moved from Florida to our hometown, she bought a pontoon boat.  This was something she always wanted.  My husband was the captain and we took her boating frequently with family and friends.  She’d strut out of her retirement community building with her jaunty pink cap to go boating—and I knew she was “showing off” a bit for the other residents.  Unfortunately, she fell in the bathroom after a day on the boat and broke her tailbone and pelvis.  That was the end of the boating, and the beginning of the vicious cycle of falls, hospitalization, and nursing home rehabilitations.

My MIL then moved in with us and I was her primary caregiver.  We had two good years before the next decline.  I took her to the senior center twice a week to play bridge.  Sometimes we would have lunch and bridge parties at our home.  Best of all, she was able to participate in all our family celebrations.  When the grandchildren were around (and running amok), she liked to say, “I started all this.”

Pneumonia and congestive heart failure began to ravage her body and she started receiving hospice services.  Even then, we put a lot of emphasis on maintaining social relationships and activities.  Hospice loves to come in and help people enjoy everything they can do in life. Her hospice group supplied MIL with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter.

Even if the last two years in our home became extremely difficult, I feel good that we did the best we could to empower my husband’s mother.

Barbara Matthews

Hospice: When Should They Get Involved?

“When do you know to call in Hospice?” This question appeared as an AgingCare Daily Question: http://www.Agingcare.com

  • My mom has Dementia and is becoming very tired and is starting to not want to eat. She sometimes hides her food I give her so she can throw it away after. She is using her walker and does do some things for herself but that would only be to maybe wash a few dishes or go to the bathroom. If I tell her we are going out for a drive or a walk she is excited about that but to get her there is exhausting for her. She is 90 and otherwise very healthy…..

When I was primary caregiver for my mother-in-law, I belonged to a support group that was run through a local hospice. Our experience with hospice is well documented throughout my book, “What to Do about Mama?”

  •  “The women that run the group stressed that hospice loves to be able to help people live their life as fully as possible—that their mission is much greater than providing comfort to people on their deathbed.” (p. 20)
  • “A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.” (p. 81)

Keep in mind that a terminal diagnosis is a hospice requirement (with a life expectancy of 6-12 months). However, many people remain on hospice well-beyond that timeframe. I have even heard of cases with a diagnosis of “failure to thrive,” rather than something more specific like cancer.   It certainly does not hurt to speak to the doctor about hospice. He or she will let you know when the time is appropriate, and it never hurts to look ahead and be prepared.

Barbara Matthews