What's the Definition of Hope in Palliative Care?

[Linda661]

As everyone can see, I've been doing a lot of research on palliative care/hospice issues today....the list of questions I have and things I'd like to know about in this area is huge.

Anyway, I keep thinking about hope.....and I ran across this definition of hope in palliative journals today:

For the nonterminally ill, hope means hope for a cure or becoming better. In patients with terminal [or life threatening] illnesses, hope often relates to living a meaningful, day-to-day life for the time they have left, relief from pain and suffering, having a peaceful death, or being able to safeguard the future of their family.

Another biggie with me today was the published things folks find of most importance in palliative care.....

Since the goal of palliative care is to improve the quality of life for people living with a life-threatening illness, determining what patients consider important in their lives is critical. Generally, patients focus on five areas:

Their state of being, including physical and cognitive functioning, psychological state, and physical condition

The quality of palliative care they are receiving, which affects their feelings of security, self-respect, and spirituality

Being in the right physical environment, whether that is home, a health care facility, or a place that offers opportunities to enjoy the outdoors and nature

Their relationships: whether they are receiving adequate support, whether they and their loved ones have clear communication and/or unfinished issues, and whether their concerns about becoming a burden have been addressed

Their overall outlook: whether they have a sense of hope, whether they can find some joy and purpose in life, if they have a sense of control, and many other existential and spiritual concerns about facing death.

I'd be interested on feedback on these issues if anyone is willing to discuss here.

Citation source: http://www.annieappleseedproject.org/realofenpalc.html

[teriw]

I'm just reading the posts in this section for the first time since joining a few weeks ago.

I hate the term "palliative care," although I understand it in the medical sense. It's just such a "hopeless" sounding term. Shouldn't one always hope (not expect, but hope) for a cure -- even if that means a miracle cure?

[mary colleen]

Teri, you're not asking me, but I'll answer anyway: yes.

[joanie55]

Even though supposedly, I've been in "palitive" care for 19 months, I definitely have hope for the future.

The longer I'm here the more new stuff can come along to help me . I'll never run out of hope.

I think some of this comes with the kind of person you are normally. I'm a very optomistic, but realistic person. If you can't be optomistic with a cancer dx, it may be an extremely difficult mountain to climb.

[carolhg]

Joanie I have to tell ya. You look so pretty in the wedding picture with your daughter and husband. No one would ever know what you have been through just to look at you. You look like the picture of health and beauty. Just had to tell ya.

Carol

[Welthy]

Teri,

I agree with you completely. I too am a realist, and know there is no cure for late stage, but there ARE miracles! We also just keep managing day by day and hoping for that "next thing" in the medical world that will extend or save LC patient's lives.

I really got my back up when we were told initially that Tony would be given "palliative" care. It is a creepy term.

(Oh, and Joanie, Carol is absolutely right! You look glowing in your photo )

My warmest regards,

Welthy

[nikkala]

When my Gram chose no treatment "hope" to her was just spending last days with family, in as little pain as possible and being with my Gramps at the end of it all.

When my Mom was diagnosed "hope" was for a cure, for survival, for taking my daughter on her first roller coaster ride.

I think the term depends on the person. We all have different hopes and dreams and what is important to one isn't to another.

[Nick C]

Hope,

What an interesting and ellusive term in my life which has been smacking me in the face for the last week or so. First week of advent you light the Hope candle.

What was hope for my mother who took the road less traveled to a certain extent?

Hope was to her not having to worry about pain before she was in any.

Hope was knowing she could live her life as she wanted tomorrow. And when tomorrow didn't allow that, she'd be comfortable.

Don't get me wrong, Hope was also Thanksgiving, Christmas and Mother's Day. It pains me that she didn't get it, but she lived thinking she would. And I am so grateful for that.

So she had hope. It's me who struggles with the concept today. But she had it.

[teresag]

A few days before my father died, his hospice nurse asked him, "Zemo, what can I do for you?" He answered with a smile, "Well, I suppose complete cure is out of the question...." He was always making other people laugh, but part of him of course always hoped that he could remain on this earth. So even "unrealistic" hope remains, no matter how dire the situation. I think this kind of "unrealistic" hope keeps some people going.

The line between maintaining hope and creating unrealizable expectations is a fine one. I agree completely that hope in terminal illness is primarily about quality of life. But I hope they revoke my nursing license if I ever try to take away someone's hope for a cure.

[brsarah]

I think "hope" changes meaning. With my mom, first I hoped we would not get bad news, then I hoped she could recover. I hoped in the beginning, just to get her out of ICU then hoped for comfort, hoped for the absence of fear, hoped for time, hoped for understanding, hoped for peace and love. Thats why I didn't understand when a doctor said "we don't want to offer you false hope" . My hope has changed in so many ways during my mother's illness, but I still have hope. Sarah