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hospice started-what do I expect? 
Started by Pooka
17 Jul 2012, 4:18 PM

I wanted to share that my husband was placed on hospice yesterday. What should I expect?
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Reply by Cath1
17 Jul 2012, 6:37 PM

Dear Pooka:

I'm glad to hear that someone finally heard you and that your husband - and you - will now have the benefit of hospice services. Perhaps Tian and Brayden others who have experience with hospice can advise you better than I on what to expect, but I just want you to know that I believe your husband and you will now receive more specialized care and attention. I hope I am right.

Please keep us posted and know you and your husband are in our hearts and our prayers.

With affection -hugs- xo
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Reply by Mark99
17 Jul 2012, 7:27 PM

Pooka: I posted below on another thread about palliation and hospice. You may find this helpful. I think that medical brains here can correct me palliation and hospice are not mutually exclusive. So you may already be familar with palliative care you skip that. I think what you can expect in hospice is what I found in 20/20 hindsight people who give so much to help you and your husband. 

I know what a difficult time this is and how hard it is to negotiate the emotional and practical details of these decisions. My wife Donna was diagnosed with stage IV NSCLC back in January of 2009. She was told she had six months left. Based on her diagnosis and what the evidence said it was correct. The reality was different, she was asymptomatic and the distant mets in the brain was operative. Our oncologist approached her cancer in what I would call a palliative fashion. We knew there was no cure but we could manage the tumors and side effects with chemo. And they did. Here is what I believe is a good definition of palliative care.

Palliative care means patient and family-centered carethat optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.— 73 FR 32204, June 5, 2008 Medicare Hospice Conditions of Participation – Final Rule

And that is what we received. It wasn’t until a year ago that Donna was admitted to the hospital to have some fluid around her lung drained. At that time she was told that the current chemo was not working. We knew what that meant and were not prepared for the formal discussion of palliative care. The draining of the fluid was not working and the cancer was winning. Donna was to be sent home for home hospice but she was deteriorating and the oncologist and the palliative care team took one look at me and knew I would fail at this. They admitted her to the hospice unit a week later. Today is in fact the day last year she went into the hospital and a week later to hospice. On August 7 she passed away. I can only repeat what I’ve heard ‘Hospice saved my life’ and allowed me to be the caregiver, husband, and champion for Donna.

The above is the factual reality of my experience. On another level there is so much more to share. Donna’s care from the moment she was diagnosed to her death was done knowing this had no good end. The healthcare team was always looking ahead, looking at Donna, looking at what our needs and wants were and me. We were the center of their world from day one. We were people facing a horrific time and they were there to make it easier. Never once did we get the impression they didn’t feel our hurt and fear. That is my impression of palliative and hospice care. It is not putting an elderly family in a kayak and pushing it out to sea. It is the community, the village we have lost in our modern world.

Hospice was hard for both of us because we knew what it meant. And to be perfectly honest Donna and I are familiar with medicine and have a take not prisoners attitude. So to that end my role in hospice was to ensure I was there and watched and participated in her care and comfort. And to tell you the truth of all the physicians and nurses I have worked with over the years both professionally and personally the hospice and palliative care team were the most understanding and committed I have ever met. They wanted both of us to be part of this and that meant the world to me. It made those last weeks not less painful emotionally but more complete. I was there caring for her or making sure she was cared for. Her linens were always changed, she was comfortable, they let me bring the dog to see her, they asked about me, and they fed me, on and on. Again, my experience is based on me being a take-charge person. If you can define your role and the role of the family and the needs and desire of your father the team will meet it.

Look at palliation as a tool to aid both your father and the family in having a good quality of life. Look at hospice as continuing that quality of life. I know I know it is not lifesustaining but it is life enforcing. And for me I can look back and focus on Donna and not on her suffering or pain but on my being part of the care team. I am not struggling with did I let her suffer but what 29+ years meant to me.

Here are some practical tips from me to you. The moderator may not want me to practice but hell with it I am a New Yorker. And as I have said this was Donna’s death and mine so my rules to a point.

Identify what your father wants and match that to the family. At the same time understand that there is a natural fear of hospice etc. Palliation and hospice is a means to achieve your goals not an impediment.

If you have the time and energy be part of the care team. By that I mean talk with them ALL of them from Chaplin to nurse to physician to aid to social worker and not just for your father but also for you and the family. Avail yourself of their experience, expertise, skill, knowledge, and love. They are there for you as well as your dad.

Don’t be afraid to speak up. I mean that in a constructive fashion. Ask questions, make comments, and understand what they are doing. Don’t second-guess as much as ask about alternatives. And remember the smartest members of the team are the nurses and the directors of palliation. The residents and fellows are ok but not as smart since they are learning. Make the nurses your friend.

And at some point you will not be using the hospice. Avail yourself of all the services they have after. They want to help the survivors.

I hope this helps. 

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Reply by eKIM
18 Jul 2012, 12:07 AM

Hi Pooka

I have been a Hospice Resident Support Volunteer for 2 years now.  I am in awe of hospice as a concept, the hospice environment and especially the hospice workers.  Here are my personal observations, in a nutshell:

The Concept

•The concept of holistic, palliative, hospice care is probably the most “personalized” experience that you will ever encounter in our vast Canadian health care system.

•The reason for this is that the entire focus is on providing high quality, personalized care to the individual at end of life.  All else is secondary to that goal.

•I love the idea that whether someone is a wealthy person or a poor person, that there is no cost for hospice care, and that top quality care is given to each and every one.

The Hospice Environment

•People are referred to as residents, not patients.  The hospice is their home.  Great effort is made to provide a homey atmosphere.

•People who come to hospice, whether they are a resident, worker, volunteer or visitor are pleasantly surprised to find that it is not a sad gloomy environment.  Quite the contrary, it is an environment steeped in positive energy, love and yes, lots of smiles.  

Why?  Some people look at a hospice as a place to die.  It is more correct, I believe, to view a hospice as a place to live.  Dying occurs in a fraction of a moment.  People come to hospice and experience living, and life, over an extended period of time.  The focus is on helping to maintain a high quality of those living moments. 

The Hospice Staff, Medical Professionals, Workers and Volunteers

•At our hospice I see staff working very long hours without any form of extra pay or compensation.  Why do they do this?  Yes they are acting professionally.  Yes they pride themselves in doing a great job.  But so do many other people in other jobs in society – and oftentimes are compensated well for doing so.  I believe that the extra ingredient is love – a love for the people that they are serving.  I see this love every day in both the smiles and the tears.

•The medical professionals are outstanding.  Their skills with pain management for instance are truly amazing.  It is wonderful to see the residents living with either no pain or with as little discomfort as possible.  Other forms of care are outstanding as well.  The other day I happened to say to a couple of nurses, “You know, I have never heard the term ‘bed sores’ mentioned here, even once.”  They kind of beamed with pride and told me how they prevent them.  Yes they pride themselves in doing a great job.  But why is the quality of care so outstanding at hospice?  I believe that the extra ingredient is love – a love for the people that they are serving. I see this love every day in both the smiles and the tears.

•I have witnessed on more than one occasion, a janitorial person, drop what they are doing to sit with a resident in their final moments when no family could be there.  No one scolded them for neglecting one of their chores.  Yes they pride themselves in doing a great job.  The hospice is always sparkling clean.  But why do they go the extra mile with the residents?  I believe that the extra ingredient is love – a love for the people that they are serving.  I see this love every day in both the smiles and the tears.

•Being a volunteer, I cannot “sing our own praises”.  It cannot be done and maintain a spirit of humility.  I will say that, if I had set out with the goal of meeting the nicest people in the world, I could have found none better than the kind souls that I have met at hospice.  Volunteers are not paid.  They do not wish to be paid.  They give of themselves and become attached to those that they serve.  They must learn to cope with repeated losses, week after week.  Why do they volunteer?  I believe that the extra ingredient is love – a love for the people that they are serving.  I see this love every day in both the smiles and the tears.

I hope you have noticed a recurring theme here – love, or perhaps loving-kindness if you find love to be too strong a word.  

I have noticed that every time I arrive at hospice that I am enveloped in an overwhelming atmosphere that is palpable.  I’ll call it love – that is not too strong a word for me.  

It is the love that is seen between residents and their families, between family members, and yes even between various families who are all there for the same reason.  

The love is there in the face of the stressed staff person, trying to do one last task before leaving after a hard day.  

The love is there in the tear on the cheek of the nurse as she leaves the resident’s room.  

The love is there on the plate of food presented so beautifully by the kitchen staff.

The love flows from the hand of the volunteer through to the hand of the tearful family member.

It is my belief that as the hundreds and hundreds of people pass in and out of hospice, they each leave a small measure of their love behind.  It is real.  It is palpable.  This love oozes its balm from the very pores of the hospice.  It is the loving atmosphere that I feel each and every time that I enter the hospice doors.  This is what sustains me.

I know that this is a very subjective viewpoint.  My only hope is that you can experience this loving essence.  And through this difficult time, that you may find in it, some peace.

- eKim 

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Reply by Cath1
18 Jul 2012, 3:53 AM

Dear eKIM:

Your description of hospice is not only educational and highly informative, to me it's a work of Art, vivid and inspired! I L O V E it!:-) Thank you!

Oh Pooka I hope your husband's and your experience of hospice will be just as eKIM illustrates! 

My Mom did not go to hospice at the end of her life, rather she passed away peacefully in hospital, yet from what you describe, eKIM, her experience in the last few days was very much like what it must be like for those in a hospice.

Very fortunately for my Mom and for me and all of our family, her suffering was greatly minimized as the palliative doctor, her other doctors and the many nurses who attended to her were really angels watching over her as they lovingly and sensitively assisted her to make her grand transition to the heavens.

Whenever my mother's slightest pain was detected or even thought to be present they ensured she had the right amount of medication and quickly to ease her hurt which helped ease mine. They gently and with such care and respect turned her in her bed and adjusted her clothes and undergarments with great regularity; they washed her and touched her with tenderness from their hands and their hearts. They whispered sweet everythings into her ear, consoling her and assuring her they were with her. They prayed for her and with me and softly wept in moments when comforting me with an empathetic expression in their eyes, the warmth of their presence and their ever abundant compassion. How precious are these people to my Mom and to me and our family in memory and in fact!

My mother passed away in the psychiatric ward of the hospital where she had spent many a time over the years being treated for her mental illness. It was the only bed option available to her in the hospital after having spent four uncomfortable days in the emergency ward. The staff in the ward all knew and loved her and they welcomed her as if it were their honour and privilege to see her through to the end. The kindness and concern, the hugs and words of comfort from each of them that I and my family received made such a difference to us. I have no words to convey how much their praiseworthy care meant to her and to me and our family!

I began the last week of my mother's life fearful and ill-prepared for her imminent death, but in the end with so much support, I could see that she so ready to go and I was helped to accept it. Just like at Virtual Hospice, we were never alone. Her final moment of life was the most exquisitely poignant moment of mine. It was my Mom's monumental moment of rapture!

I wish everyone could experience death in a peaceful setting surrounded by love. Love to me is never too strong a word. Throughout our lives, but especially at the time of our death, the time of a loved ones death, we all need love. You and the other hospice (and hospital) volunteers do such amazing work that truly transforms the lives of those you come into contact with and you all do it from the goodness of your hearts.

I hope for Pooka and her husband, and indeed everyone, that when life is coming to a close they will have the benefit of like-hearted souls to care for them like you, eKIM and Tian and Brayden and all the others, who willingly choose to care for people who are dying and their families. Yours is a labour of love.

With affection and gratitude - hugs- xo

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Reply by Pooka
18 Jul 2012, 7:23 AM

Once again, thank you! I am sitting up late at night on this computer--of course, unable to sleep. Yesterday we were told that he was just too weak for more treatments, and basically out of options. My husband was shocked at first, but then admitted that he knew the time was close because he has been unable to bounce back. He seemed so happy this morning. I told him so... and he said, he was relieved because now he can talk about  some things that were on his mind. He said it was a relief. With that, what can I say! It is still hard.  Thank you and I will keep you as updated as possible. We will meet with the team tomorrow. Thanks again.
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Reply by Tian
18 Jul 2012, 12:42 PM

Dear Pooka

As a volunteer in a palliative care ward I can definitely relate to what Mark99, eKim and Cath1 have posted. The world as a whole would be a much better place if it exhibited a fraction of the love and compassion on display in hospices. That being said, people die there. And that can involve a lot of pain and suffering which the staff, although with the best of intentions, being human may not always succeed in alleviating. No one can predict how much time your husband has left, how much pain he will have and the lengths of periods of lucidity. There can be times when time itself can pass terribly slowly. But rely on yet question the staff and most importantly let your husband feel the love you have for him and his journey will be as comfortable as possible. And you can easily wear down so don't forget to look after yourself too. Please keep us informed.

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