What to expect | Hospice & Palliative Care
Coming to grips with one's own mortality or the mortality of a loved-one is a deeply personal process that is never easy or truly conclusive. We don't want that special person to leave us, at least not yet, not now. But when we're honest with ourselves, we know that passing on is an inevitable part of all of our lives and that the quality of life we or our loved one lives matters much more than the quantity of life we share.
Our families often comment that they wish they had elected hospice earlier. We agree. We cannot over-stress the importance of making a hospice election early - the earlier we get involved in care the greater our opportunity to improve the quality of life there is yet to live. That's why we recommend that you speak with your physician or facility caregivers about hospice as an option as soon as life-limiting circumstances are apparent to you.
Hospice is the quality of life choice, hospice is not giving up. Consider that we offer more help, more care, more eyes on the patient, fewer drug side-effects and the option to revoke your election and seek alternative care at any time without any penalty whatsoever.
Taking all of the foregoing into account, we are very well aware that early intervention is not always practical or possible for a nearly infinite number of reasons. Your circumstance is what it is and there's only so much you can control. Know that hospice intervention is nearly always helpful regardless of the time in a lifecycle. So no matter what your circumstance, we're here to help.
A Hospice Story
We thought the following fictional account might help you understand how Freedom's Hospice Team can become your team and how we can interact. Keep in mind though, every plan of care is individualized and determined by a patient's stage in life, medical acuity and personal and family preferences. Therefore, we cannot predict what to expect in your case and your experience may vary significantly from the account below.
This fictional story has been modelled from actual cases, however, this is not the story of any one Freedom patient.
At 77 years of age John Smith's doctors concluded that his metastatic lung cancer had progressed to the point that further curative measures would do more harm than good. His doctors believed John's prognosis was that he had six months or less to live and therefore his primary doctor wrote an order to Freedom Hospice for a hospice evaluation. Freedom Hospice reviewed John's records and determined that he was hospice eligible and verified that Medicare would cover 100% of the cost of John's hospice care. Being of sound mind and physically able, while feeling minor effects from his disease, John, his wife Mary and his daughter Annie had an informational meeting with Freedom Hospice. They appreciated the open, consultative, zero-pressure conversation and decided to complete the paperwork necessary for John's care.
The next afternoon at their home, John, Mary and Annie spent two hours with John's Case Manager (his Freedom Nurse) while she completed a nursing assessment. During the process John's nurse gathered details about his medical state and started to get to know him, Mary and Annie. John and Mary chose to have a visit from Freedom's Chaplain once a week so that they could pray together, but didn't feel they needed ongoing help from a Freedom Social Worker. They understood that an initial visit from a social worker was required so that an assessment of needs could be completed and happily agreed. John's Freedom Team, including Freedom's Medical Director and everyone else that would be involved in his care evaluated John's needs and those of his family. They determined that John was in relatively good health other than his hospice diagnosis and prescribed a visit from his nurse twice every ten days after the inception of care. While John didn't feel there was an immediate need for a Freedom Certified Nursing Aide (CNA), his team recommended a visit once a week and John felt that was fine.
Freedom's Medical Director analyzed John's medications and determined that a number of them, related to his prior cancer treatments, were no longer necessary. John and his family were consulted about the proposed medication changes. They agreed to eliminate medications that had side effects that made John weak every day and sick every evening. The goal now was to provide the highest quality of life for as long as John could live.
During the first four months of care John saw his nurse twice every ten days, his chaplain once a week. After meeting his social worker John agreed that she was very helpful and asked to see her once ever two weeks. After meeting his CNA, he decided he'd like to see him twice a week. At this point John and Mary didn't feel the need for any help from a Freedom Volunteer. Importantly, John felt much better after the medication changes, spent much more time visiting life-long friends and Annie's family and along the way, he discussed with his social worker how much he'd really like to go fishing, while he still can.
During the second four months of care John's illness began to cause him pain that warranted an increase in pain and anti-nausea medications as well as new medications to help him breathe easier. John's nursing visits were increased to twice a week, but the rest of his visits remained as previously scheduled. During this period, John's social worker helped Mary find an attorney to make sure their affairs were in order. That process brought out strong emotions in Mary that their social worker helped Mary work through over the course of five visits that week. Also during this period, John's chaplain and nurse took John, Mary, Annie and a grandson on a fishing trip. Afterwards, Mary described that day with John and her family as one of the most meaningful days of their lives.
By the ninth month of hospice care John's illness had progressed and his medications had been adjusted so that John was still awake and aware, but not in pain. John now needed assistance getting out of bed, using the bathroom and eating. Mary could help John with all of his needs except, with her arthritis she couldn't steady John to help him bathe - but his CNA was there in the morning to help John bathe and get ready for the day, five days a week. John's social worker visited twice a week, his chaplain still visited once a week and his nurse was there twice a week. With the help of their chaplain, their pastor and their social worker, both John and Mary had made peace with this stage of life. That isn't to say this wasn't a sad time, but much of the stress of the situation had been managed by their professional hospice staff so that to the greatest extent possible, John and Mary could focus on living the life together they had yet to live.
After seven hours of Continuous Care, Mr. John Smith passed peacefully at home after a year on hospice care. With Mary, Annie, his pastor and his hospice nurse at bedside, everyone took comfort knowing that the last months of John's life were lived as best they could be lived for as long as life allowed. Mary's social worker helped make John's final arrangements and his pastor and his chaplain presided over his ceremony.
For the thirteen months following John's passing, Mary and Annie took advantage of the bereavement support Freedom offered. After two years they both still miss John every day and will for the rest of their lives, but they are at peace knowing they made the most of their lives together.
To learn more about Freedom Hospice call (817) 265-0151 Monday through Friday, 8 am to 5 pm. Or, if you wish, click on the "Contact" tab at the top of this page or the bold "Click here" below and send us an email. We're here to help.
