Hospice – friend or foe?
A blogger friend, Terry, is preparing for her beloved brother Al, to move home from an Assisted Living Facility. Al suffers from Parkinson’s disease and his general health condition is extremely precarious. Terry blogged: “I finally heard nothing from the phone. I had done everything I could find to do trying not to have to make the dreaded call to Hospice. I decided not to use the Hospice here in our county. I was very disappointed in them with the lack of care they gave to my father.” http://terry1954.wordpress.com/2013/06/17/al-and-hospice-meet/
Vic wrote this on her Face Book page on the 15th of May 2011… “Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 yrs., age 51 to a heart attack last Tuesday. My Mother is one of the strongest, bravest people I know… How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him…? Especially my Eunice Friends will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that that is extremely selfish, but I love my Grandfather so desperately, it’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic…”
I am a great believer in the services that Hospices offer – worldwide. Hospice cared for my Dad in the last week of his life and for Vic the last 5.5 months of her life. My experience was positive.
The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. Seven years later the United States opened their first hospice facility in 1974. In America the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness. In my country only 5% of the dying actually have access to Hospice services.
The original idea of hospice is that once curative treatments are no longer effective, a patient enrols in hospice to receive comfort care. In our culture of “fighting” death illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.
Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.
The benefits of hospice and palliative care
Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.
Source: National Hospice and Palliative Care Organization
Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.
When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.
The above is all well documented facts. Yet, when a family is faced with that terrible decision to call in Hospice, it is a deeply emotional decision. The phone call is a terrifying telephone call. This is evident from Vic and Terry’s posts…..
It made me realise what a massive challenge lies ahead of us in Stepping Stone Hospice. We need to educate the community. We need to dispel the fear of and for Hospice.
Vic's Final Journey 
A friend of mine is facing this same challenge with his Father. Not an easy one.
His Mum is all also, she says no. But the call is up to my mate and he feels real guilt.
But for his Dad and Mum, it is the best decision for them all, he knows this.
I hope you all get to a comfortable position T. xx
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It is a difficult decision but he will see the benefit immediately in their improved quality of life. xxx
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Yeah, the decision is hard, but the outcome gives everyone some breathing space.. xx
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Reblogged this on terry1954 and commented:
I learned more about Hospice from Tersia
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Thank you for the reblog and follow. I have followed your and Al’s journey for a while. I understand the pain and burden of Al’s illness. I cared for my Dad during the last 18 months of his life – my Dad suffered from Alzheimers. Vic and my Dad both died in my home -gentle deaths surrounded by their loved ones. The great thing is however the quality of life that it gave Vic… I pray Terry that Hospice will do the same for Al. You are in my prayers. It is a difficult journey that your are on, and it will become even more difficult. Today it is exactly 5 months since my precious child died and I am still heartbroken.
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I learned more about hospice by reading your blog. I loved it so much I am now following you and have reblogged this for others who may be walking in my shoes
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I work very closely with some of the Hospices in the area of Spiritual Care. It can be a very taxing situation but oh so rewarding. Keep plugging along and know you have one more person praying for you to in this journey!
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Thank you so much!! I had a ministry working with TB and AIDS patients for years. Then my dad came to live with me (he had Alzheimers), and Vic became very ill just after his death. It is the most rewarding work in the world. Thank you for your prayers. I really need them as does our Hospice.
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the end of one race is usually the beginning of a new one ,and when you cross the line, you are given options based on past performance. it’s really that simple. we only remember those who lead by example, the wealth is forgotten, the meaning of all this being, the more we give time to others the more time will be given to us. in the world at this moment in time, many great changes are occurring, so if you know anyone who is passing that way, to the next race, comfort them with the knowledge, that to live you must die, and so dont worry about hanging on, let go and be at peace, you’ll be gladly surprised, and all those who know the deceased person to be too, will realise also. i’ve been to very few funerals where the passing has been one of joy, but each time i did encounter happiness at a passing, the one moving on had led a great example, so there is something in it…take care
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Reblogged this on jmgoyder.
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Reblogged, my friend!
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Thank you my friend!
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Fantastic post … and it gives comfort and information. During my cancer journey I met some fantastic women – some already knew that treatments didn’t work – they knew roughly how long time they had left. Over here in Sweden we get Hospice help at home, doctor 24 hours on call and 24/7 nurses all the time. And through talking to they dearest I understand that the service has been fantastic into the last minute and their beloved have been able to die at home. Both doctor and nurses are specially trained – I haven’t heard a bad word about hospice help at home or at the hospices. The best thing has come out of UK.
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Thank you for commenting. I hope that people will say this same about Stepping Stone Hospice.
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G’day! It is a difficult challenge, but a practical one indeed to have a loved one live out their final days in peace, true!
The staff are well trained and think more people need to make the decisions before hand so it is not forced on their families to make the hard decision for them…
I was never a fan of hospices, but not it is the best option rather than someone not being able to look after themselves at home (or family (not you Terry :)) that sometimes becomes to busy or self absorbed in their own lives to be able to provide proper care towards the tale end…
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Thank you for visiting and commenting!
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Please don’t forget the pioneer of death and dying work, Elizabeth Kubler-Ross. Her work is legendary in the field of death and dying!
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I didn’t know hospices started in the 50s. That’s interesting. Bless the woman who started it.
Oh, I so much don’t want to end up there. People whose job it is to come in and tend to me. Hope not, hope not.
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I agree! I hope that I will one day be allowed to die with dignity.
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“allowed” to die with dignity. Crazy, isn’t it.
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Thank you for the reblog
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