Posted by G van Rij on Oct 04, 2019
 
 
Hospice Care
 
Dame Cicely Saunders and Mother Teresa both, many years ago, started to care for the terminally ill and the dying. The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. 

 

Two women in different continents came up with the same incredible idea that we still know today as hospice or palliative care, giving shelter to the dying and the ill. When I think about the word “shelter,” I think of how the elderly, sick, and dying deserve one thing, which is “dignity.” 

Dame Cicely Saunders and Mother Teresa both understood this, that dignity was the key for all human beings in these situations. Poor or rich, no matter your cultural or religious background, each and every person deserves to die with dignity and peace of mind.

Here are some facts and definitions:

Hospice is a philosophy of care. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a hospice care team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well.

Hospice care is not just a place to go to die. Across the United States, over 5,500 hospices provide medical services for pain management, lend emotional support and offer spiritual resources and therapies as patients enter their last stage of life.

 
Program: Hospice Care
 
Definition and Stats of Hospice Care

The Wikipedia definition says: 
 
Hospice care is a type of care and philosophy of care that focuses on the palliation of a chronically illterminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs. In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter in Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes.
 
When you google who created the first hospice in the world, Dame Cicely Saunders shows up in England in 1967. However when you google Mother Theresa the date is 1952 in India where she established a hospice where the terminally ill could die with dignity.
 
Both women as we mentioned earlier in the article are clearly pioneers in this field and showed us what vocation could look like.
 
Statistics in the US:
 
  1. The U.S. hospice industry has quadrupled in size since the millennium. Now, more than 65 percent of Americans spend their final stage of life in hospice care. (2014, Huffington Post)
  2. Every year, 1.6 million people enter hospice care. (2013, Forbes)
  3. Of all patients receiving hospice care, 66 percent received care at their own home. Only 27.4 percent received care at an inpatient facility. (2013, National Hospice and Palliative Care Organization)
  4. More females are served by hospices in America than are males. In 2012, females accounted for 56.4 percent of hospice admissions. (2013, National Hospice and Palliative Care Organization)
  5. Across America, 54.7 percent of full-time employees in hospices are registered nurses. Only 35.7 percent of employees are aides. (2013, National Center for Health Statistics)
  6. The top five diagnoses (cancer, debility unspecified, dementia, heart disease and lung disease) account for over 83 percent of patients. Cancer is the largest category for hospice diagnoses, accounting for 36.9 percent of patients. (2013, National Hospice and Palliative Care Organization)
  7. Over 65 percent of patients’ pain was brought to a comfortable level within 48 hours of admission and assessment. (2013, National Hospice and Palliative Care Organization)
  8. Over 70 percent of families would rate their hospice care for their loved one as excellent. (2012, National Hospice and Palliative Care Organization)
  9. While hospice care is being used more often, many families wished they had placed their loved one in the care of a provider sooner so their loved one could be more comfortable during their last days. Over 60 percent of patients only received care for 29 days. (2013, National Hospice and Palliative Care Organization)
  10. Over 55 percent of hospices are for-profit organizations, with only 29.7 percent of hospice care services classified as nonprofit. WesleyLife has been a nonprofit organization since we began serving the community 65 years ago. (2013, National Center for Health Statistics)
 
I am sure these numbers must look slightly boring to you, what is noticeable though is that the statistic number 9 is astounding; "many families wished they had placed their loved ones with a care provider sooner". This is where the topic of hospice needs to receive more awareness around the globe. Not only as a vocational service but when you need their services so that we are able in layman terms to understand the process and not feel the constricting guilt that builds up in our chest for placing our loved ones in care.
 
 
Stories from a Hospice Nurse

In one particular case, there was a woman who had a difficult life. She ended up having breast cancer and it metastasized. And during the course of time, she really wanted to have control over her life. She was seeing it was spiraling down.

I was able to make sure that through the use of doctor’s orders, through the use of friends to cater to her needs. One of her needs was to go out and have a smoke. It wasn’t exactly good for her diagnosis, but I was able to get a doctor’s order and be able to help her out and fulfill some of her last wishes.

Even though the family didn’t understand, I was able to bring them along to that space, to that spot where they could focus on her and not what’s around her, whether she’s smoking or not smoking. It was quite the event.

As we went along, I would sometimes sit on her bed and sing with her and we would go back and forth singing, and all of the sudden she stopped and she looked around. And this was fairly close to before she died. 

I said, “Oh, Ruth*, are you looking at those angels again?”

She says, “yeah, and you’ve got two of them on the back of you always.”

And so that has carried me through again as an encouragement.

At the very end of her life, she had two special people that she wanted to be there. I was able to allow everybody to come in and minister to people where she was at, and they could say their goodbyes. 

Then I realized there was that special quiet, sacred sound that happens before someone dies, and I realized her two friends were sitting at her side. And I whispered, “Ruth, guess what? Your two friends are here, and there’s nobody else here.” And she took a huge smile and she took her last breath.

That is such a touching time for me because with Ruth she really encompassed all the different things I could do with her. I could even help her at the very last to be able to say, 'hey your very two favorite people on earth are here waiting for you.'

One of the most important things is that hospice – whether it’s palliative or hospice – is increasing the quality of life. Wherever you may find yourself, whether it’s in a palliative situation or hospice situation.

Brenda Anglin, RN, BSN
On-Call Nurse
Crossroads Hospice & Palliative Care

*Name has been changed

If you found this information helpful, please share it with your network and community. 
Copyright © 2018 Crossroads Hospice & Palliative Care. All rights reserved.

 
Voices from the Frontlines - Nurses on Death and Dying

 
 
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Reflection from Experience

The nurses and staff members who work specifically in hospice have a little extra humanity; I would like to call them “mensch.” They give this care knowing how important these last days are in a person’s life, how important it is to give it your all.

The staff in these hospice places are in one word incredible. They have to not only deal with the patient, but also with the patient’s entire family dynamics. I am in awe when I see the patience, the utmost gentleness, and the extra care they give the families, especially the ones that sleep there in the room with the patients. They encourage you when you need that extra shoulder, they say the right things at the right moments to give you a little cheer. 

For example, in my case, they encouraged me to take a little stroll through the garden, and when I tried to protest, saying “What if he dies just when I leave?” Their answer: “It was meant to be.” They explained that it might not make me feel better, but they know when you take that breath of fresh air from outside you can give the patient in there more of your loving care and nurturing just for having taken that walk. 

As the staff helps you through every phase of the process by telling you what symptoms are next, you are slowly guided into the dying process as gently as they know how. Even though inside of you, your heart screams to get you out of there, you are bound with the invisible ties of love that bind you to the person in the bed. Even though you cannot recognize their bodies, you know that this is the only place you want to be.

Again, in my case, I have made several promises in my life to help someone see it through till their dying breath, and I have kept my word. Afterwards, you know what an enormous privilege this is to be asked for such a huge task. They believe in you and your strength so much that they want you with them. They not only need you, but it is your presence that gives them the strength to let go of this life as we know it. This is what I have learned… it is a privilege. 

Thank you to all Hospice Staff around the world, you are doing amazing work. I so admire your dedication to see things through!

 

Copyright © 2019 G.van Rij. All rights reserved. 

 
 
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