This work, this life’s labor of love, which I do every day, I often feel gifts more
Back to me than I could ever give. A new friend has shared their beautiful reflections on this time and I am so very touched by her words. Please take a moment to read!
I do wish however, that her beautiful self might have identified with a nymph Moreso than the Harpy. She is no punishment sent to annoy as mythology portrays the harpies - but she does so incredibly stir up the energy and bring a breath of fresh air in moments when it is so needed.
Out my kitchen window a few minutes ago... More was out my front window!!Posted by Nan Hough on Sunday, February 4, 2018
How easily we forget - sometimes it’s just about one more good day.
I love this Article, I love it as I snuggle down in my bed and listen to my body, taking some time to rest. This is time I don’t feel I have, but my body is demanding it, to heal, to regenerate. Three laptops (yes I said 3) sit mostly abandoned - one plays an audio book I’ve been meaning to listen to for weeks, but it’ll drift away soon too. Sleep is coming at 1pm on a Monday - because my body demands it and I, having finally listened, will relent to its greater wisdom.
I love the medical field to which I have dedicated the greater portion of my life and passion, I love even more my newer appreciation for nature and where she knows a great deal if only we listen. I love that these two approaches CAN work together very powerfully when we let them.
So read on my friends, and listen to what your bodies tell you, and consider carefully what it is you need as you demand it of yourself and your doctors and your body. As for me, I’m going to sip my tea and rest in the middle of a busy afternoon - because it’s not “doing nothing” it’s very important healing.
I love this!
Service failures and delays in home hospice is a complex topic. A lot of things come into play in maximizing the experience and lowering potential for negative incidents (and outcomes - which has always seemed an odd phrase in the hospice world given our general perception of the outcome) as well as a requirement of accountability on a personal and professional level.
While home hospice care and home health care share a similar model of service delivery, there are some distinct and important differences. These differences are ones that I would fight with an incredible tenacity to maintain recognition of and protect. Those dying at home are an even more vulnerable population in a sacred place in life and that sacredness should be protected. Planning ahead as a family or individual, making wishes known, even all of this and the best plans, don’t necessarily prepare home caregivers for the job and the grief of walking a loved one through end of life. Expectation setting and education is key but so is proper resourcing and due diligence on behalf of agencies delivering such service.
I walk many patients through basic comfort medicating and interventions by phone, often on the way to an urgent visit. (Bluetooth! Handsfree of course!) This is why we have comfort packs that are sent usually day 1 of admit. I however, also work to set realistic client expectations from day one. We aren’t, as workers in this distributed healthcare system, issued teleporters and bags of rescue medications instead of cars and stethoscopes. Waiting at crisis moments is often a necessity, and that needs to be understood by anxious and loving caregivers. At the same time, family members and caregivers do need to learn how to use these things and call for assistance when appropriate and hopefully before crisis level. Individuals who insist on maintaining autonomy without additional caregiver assistance must also understand the basics of the use of these and call to report symptom changes so that help can be given preferably before crisis.
Greater innovation and technology uses in these realms will help the issue in time. Telehealth, will hopefully never replace face to face, but it’s a powerful adjunct and I encourage my private clients to utilize such things for monitoring and to assist in my conferencing with them to lower cost and travel. In the big business realm, online videos, tutorials, support and monitoring have a lot of potential to mitigate nurse to bedside times, throw in some Med delivery drones and there you have it - high tech comfort through the continuum! (I have such big dreams)
But there’s so much more to the picture and the whole truth. Medicare doesn’t reimburse for that technology support (for the most part) so companies aren’t widely investing (Not in hospice anyway) so what about where we are at now?
Hospice agencies, both for-profit and non-profit, are trying to provide a good service to a growing demographic on a tight reimbursement (often). There’s endless push to grow census while corporate drives to postpone hiring additional staff.
Even more-so than in other areas of healthcare (and believe me I don’t say this lightly, I come from ER where staff turnover rates in busy urban trauma centers is as high as 75% yearly) burnout is very real and all too likely. So find a good hospice nurse, now burn him/her out with increased admits and case load demands, the feeling and worry of bad/inadequate service delivery and failing patients/families and then find me another one when the first one quits; all for the salary healthcare will pay.
Positions often go un-filled for months, the additional demand of that still squarely on the shoulders of those who fight valiantly for the good deaths of their patients. I wonder how often they feel that the very company supposedly supporting their mission and vision is actually standing on their superhero capes.
The problem and the solution both are not singular. As a respected manager said to me recently: “this is not solved by just throwing FTE (staff hours) at it”. I do believe that’s absolutely true, but it’s also not solved by not doing so. Agencies must innovate and plan strategically to provide service effectively, compassionately and supportive of the difficult cases, invaluable staff and intensely difficult nature of the work being done here. Our medical system must come to understand the value of earlier referrals and collaboration with hospice care. The general public must take increasing personal accountability for the end of life they want to live.....oh and there’s so much more......
I think the author is quite fair in saying there were a number of elements that might have improved - and even that what happened was better than the outcome in a hospital with aggressive measures. I think the author heard what was said in the hospice admit, hospice commercials and the product advertisements as seen on TV, the pretty packaged promises without the informed consent that comes with them, that less than optimal death remains a risk, but we will try!
Sadly, I think that’s too often the case - but then again that’s why I work independently as a private death doula - in the space where corporate hospice leaves an ever widening gap of care.....
I think you’ll see a growing trend of end of life care managers and death Doulas, probably some fabulous new names too to fill this space. To help further in providing that good death that hospice was able to provide with more regularity before it caught on and became bigger and more corporate.
This is hard work, this is inescapably difficult, and hospice like any other entity is made up of human beings - so sometimes we will fail, sometimes you might, and sometimes it won’t all be ideal even if we did it all perfectly. It still beats the alternatives though, and we keep trying to learn and grow and be better......
I don’t say that because it serves the mission I’ve given the last 2 years of my life to - I say it because I have to believe there is a space in which we can give you the better death we promised.
This - so much this -
More than most of the videos and posts I’ve seen on what we do - this captures the spirit and intent, the passion and intense beauty.
I am truly blessed by my calling - to every last breath.