Hoping for Hospice

A number of years ago, I realized a passion and strengths that would be best utilized in providing hospice care for terminally ill persons.  I should rephrase that – coordinating or administrating care, not providing hands-on.  In that, I do not in any way mean as professional medical staff.  Ever seen me apply a bandage?  If you need immediate medical attention, skip me on the Speed Dial.  I would be as likely to obtain a nursing degree as to master rocket science – probably not happening.

When a job in administration at a funeral home came up on my radar, I thought it might have enough similarities to satisfy that yearning.  After a year and a half of bucking policy, process and protocol; I decided to step away and find a role in preserving lives; not preparing them FOR long-term preservation in one manner or another.

The cemetery and funeral home experience did however provide the opportunity to overcome any discomfort with dead people.  I dealt with more dead people than live ones in that job, and frankly preferred the dead ones.  They tend to complain less frequently and are very good listeners.  Quite appreciative of any small thing you do for them.  Leaving the music on overnight in the viewing room set to the oldies station was one they really preferred.

I will be the first to admit, it is thought of as kind of weird to want to provide care and services for patients and families at end of life.  But this is MY vision of what hospice could be.  When a family has a baby there is a service called a doula that helps care for the mother and the family as a whole during the transition from pregnancy, through labor and delivery into early parenthood.  And we all remember how overwhelming and daunting that journey was or can be.

The vision I have for hospice care is that level of care of all the minutiae of life surrounding the family so that they can focus on the care and alleviating the pain and attending symptoms of the terminal patient.  Tasks that take away from time with the patient and deplete caregiver energy, such as providing meals, house cleaning, taking care of laundry, child care, pet care, errands, banking, prescription pick-ups, personal assistance with daily living skills and yard care would be assumed by others either on a volunteer or pro bono basis - with donated professional skills.  It's my daydream; it's feasible.

Within our church family, when members have had ongoing medical issues or terminal illnesses, we would form a cadre of people to attend to different task strengths.  One man didn’t have the daily strength or coordination to shave, but took comfort from receiving kisses and caresses from his spouse and family members; so someone came to shave him twice a week.   A woman enduring chemotherapy for breast cancer couldn’t stand to be in the kitchen and cook meals due to waning energy level and nausea around food; we found someone who habitually overcooked for her family and often had leftovers to share.  A family who was finding their yard work getting out of hand from frequent hospital visits arrived home to find a crew of 3 mowing, edging and weeding their yard on a clear weekend. 

Medicare covers medically necessary skilled care for hospice or end of life care.  As part of licensing and operating regulations 5% of those services need to be volunteer based.  My long-term dream is to assist private insurance and medicare to validate that the continuum of care should encompass all aspects of life and enlist a cooperative effort to not only support the terminal patient, but also the caregiver to prevent caregiver burnout and maintain a high level of functionality when not overwhelmed by letting the daily tasks pile up to a point where there is no getting ahead.  

Providing services on a rotating basis to augment the time that a family has help with managing palliative care and treating symptoms to aid in the transition from life to death is a noble passion.  There is a trend in home health, hospice and long term care to promote aging in place, keeping someone in their own home for as long as it is safe and prudent to do so.  Enabling them and their caregivers to take responsibility for their medical treatment, be educated on how to stay safe and healthy and empowered to take steps to do so.   This trend needs to extend to caregivers and palliative/end-of-life/hospice care as well. 

In a perfect world, I would have at my disposal a list of volunteer and paid resources for each and every request, need and desire.  Therapeutic massage, dog groomer, mobile chef, landscape maintenance, housekeeping, car maintenance, reiki worker, home manicure/pedicure provider, hair stylist, someone to clean out closets after a death occurs and coordinate delivering donations, funeral home arrangements, celebration of life resources, handy man, musician for every taste and mood, as well as a magician just in case a kid’s birthday party has to happen in the midst of a terminal illness.  Life tends to continue to happen, even as death encroaches.

And once we get this down to a science and can adequately meet each and every need to the best of our ability for each and every one of our clients/patients and residents, I will feel truly and completely adept, useful and blessed to have created one hell of a legacy.  Then I will need to find someone who can maintain it while I reap my reward of most likely utilizing said services to support myself or a member of my family in the process.  

Long story short, I want to make sure the service is cultivated and supported to work the way I want it to work long before I or my loved ones need it and then carbon-copy the program in multiple areas so that others have the same option.  THAT is the way hospice/end of life and palliative care works in my perfect world.  Let’s make it so and boldly mold hospice to the needs and treatment of the whole in way that is not served at the moment.   

It may not be possible to encompass my whole vision as I'm realizing the more I research due to liability issues and legalities, an unfortunate side effect of a litigious society that impedes the best intentions.  But that is a whole nother story, and not one I'm eager to explore.