We had our first hospice meeting this afternoon

Initial hospice meeting today, May 14, 2012

Hospice care is for people who can no longer benefit from regular medical treatment (and are likely in their final months of life). The goal of hospice is to keep pain and suffering to a minimum, not to cure the underlying illness. For both the patient and their family this requires a shift in mindset from searching for a treatment that will restore health to accepting that comfort, dignity, pain relief, and privacy are prime concerns.  We had our first hospice meeting this afternoon, paperwork and tough "discussions' were on the agenda.  My sister Charla, son Eric, his wife Callie and daughter Nadine were all present- it was presumed to be a tough meeting.

It was a necessary meeting. Our oncologist has turned over medical care and pain management to hospice which means Terence now has a private nurse who'll manage pain, give check ups, flush his PICC line, assess any/all needs in our home as often as we need it, so that's a benefit.  No more  weekly gasoline and parking expenses at UW Med. Center in Seattle (although I will miss our weekly lunches in China town).

 During today's initial orientation, the hospice manager met with us, to assess the plan of care and began the evaluation as to whether  we need to be equipped with any special gear, such as an elevating hospital bed, a wheel chair (arriving tomorrow) or ramps for a wheelchair, etc. We  briefly discussed the need for the hospital bed (Terence can no longer sleep in our bed)- but it just seems too soon to park one of those in our living room! 

I don't know how to explain how we feel. On one hand we are grateful for hospice, it will make life easier regarding travel, etc and give us tighter control with pain management

 on the other, well, it's obvious. It's 'hospice'-  a huge change of direction for care. And  when we got down to the nitty gritty of it all- when filling out the (mandatory) Pysicians Orders for Life sustaining Treament (POLST) it is clear we are not ready. The POLST is a relatively new document that states a person’s end-of-life wishes. It is different from an Advanced Directive in that Advance Directive does little to protect a person from unwanted emergency medical care. The POLST is designed to instruct emergency personnel on what actions to take while you're at home  (on hospice, all your medical care, even emergency treatment is directed from home, not the hospital or doctors' office). The document covers 4 specific directions: CPR, Medical interventions (to what degree, i.e.comfort measures only, of full blown intervention including hopspitalization and ICU care), Antibitotics (allows patients to determine when and if antibiotics should be used to treat infections), and Artificially Administered Nutrition.

At some point in our lives, we all have lightly or even jokingly discussed what we would want if we were ever in a situation like this.  This moment for Terence was very surreal, and definitely not light. Suddenly, the instinct to survive kicks in and you could never imagine denying yourself treatment! After much thought  and prayer (several years, actually), he decided what a shame that would be to die from dehydration because he denied IV fluids (considered 'medical intervention').  I know decisions like this all sound like a  'no brainer'- but it's truly not for so many different reasons.

By the end of the day, we decided that since 'Hospice' comes from the Latin hospitium, which means hospitality  (beginning in Europe in the 12th century, hospices provided lodging and care for weary pilgrims and the dying), well, we're definitely weary so we accept this hospitality of care in our home and will rest awhile.

Thank you for your prayers,

Sherry