All Things in Moderation

Before discussing my involvement with hospice and how it came about, I suppose I should give you a few generic facts regarding hospice.  Remember though, I’m just a small speck in a very large and complicated organization so I’ll not only be brief, but I can only comment on aspects of hospice that I am knowledgeable about as a volunteer.  A few of you asked for this post so I’ll give it my best effort.

In order to qualify for reimbursement through Medicare, Medicaid and private insurance there are four levels of care that must be met, which I’ll get to below.  I imagine most of you already know that hospice is defined primarily as palliative care during what doctors and patients together determine is the last six months of a terminal illness, when treatment options have run their course or the days and months appear to be dwindling.  In addition to this though, and the primary reason I became involved with hospice, is the goal of incorporating the family into the process of dying.   The words comfort and dignity are two popular words in mission statements from most hospice care groups.  Here are the essential goals of hospice as outlined by the National Hospice and Palliative Care Organization.

Hospice provides support and care for persons in the last phases of an incurable disease so that they may live as fully and as comfortably as possible. Hospice recognizes that the dying process is a part of the normal process of living and focuses on enhancing the quality of remaining life. Hospice affirms life and neither hastens nor postpones death. Hospice exists in the hope and belief that through appropriate care, and the promotion of a caring community sensitive to their needs that individuals and their families may be free to attain a degree of satisfaction in preparation for death. Hospice recognizes that human growth and development can be a lifelong process. Hospice seeks to preserve and promote the inherent potential for growth within individuals and families during the last phase of life. (emphasis mine)

As I mentioned above, there are four required levels of care in order to maintain certification by Medicare, Medicaid and private insurance.  These are really the basics of hospice care, as far as my understanding of it anyway, and will vary slightly with enhancement from one hospice group to another.  The first is routine home care, which isn’t necessarily only provided in the home, although most hospice patients are treated at home, and is the essential backbone of hospice care.  Routine care provides a variety of services including access to and delivery of medical equipment, medications, gauze, bandages, etc. and 24 hour on-call service by a registered nurse as well as nurse evaluation visits and emotional support to the families and patient.

To satisfy this first requirement our group typically sends a nurse out on house calls two or three times per week and an aide at least that many times depending on the status of the patient.  We have three doctors on staff part-time, one of whom is in charge of our program.  One doctor is on call at all times as medication changes are frequent and occasionally one of our patients needs to be seen for a medical event other than their terminal illness.   The most common are falls.   Our nurses’ aides are primarily in charge of personal care such as bathing and changing dressings etc.  We also have sitters by request who will come and sit with the patient while the caregiver gets out for a few hours once or twice a week.   And then of course we have our social workers and counselors, whose duties I’ll describe below.

Locally we have a number of small, independently operated 4 to 6 patient facilities, situated in homes, and staffed by trained nurses’ aides, which accept our hospice patients, as well as other patients.   The family pays a monthly fee and our hospice group provides the routine care as described above to enhance the services.  These facilities are recommended for families who are unable to care for their loved ones at home for whatever reason and only if it’s deemed affordable to the family.  These providers typically charge in the neighborhood of $3000-$4000 per month and are not covered by Medicare or Medicaid.  We generally try to keep patients in the home though as long as possible.  In other areas there are hospice homes or larger facilities but I’m not as familiar with the particulars of those, or how they’re funded, beyond the typical funding we receive, but I do know some are supported, at least partially, by charitable contributions.

Continuous care is always provided in the home and is defined as a temporary allocation of resources to promote the alleviation of more severe symptoms and increased needs by placing a trained health care worker in the home for up to eight hours per day.  Because of the demands on the staff this is always a short term arrangement generally for no longer than 5 to 7 days.

On a similar short term basis Medicare will reimburse for what they call general inpatient care, in a hospital facility, when symptoms require daily intervention of a more intense level.  Typically this is when a patient’s remaining life is measured in days rather than weeks or months and is in the active phase of dying.

And finally, respite care, which focuses on the family, is a five day institutional placement of the patient, generally in a nursing home, in order to give the caregiver a break for a variety of acceptable reasons.  The burden on families when caring for a loved one at home can be enormous in some cases and so we try to give support whenever possible.

Above are the basics required for reimbursement and the general parameters of what is provided by hospice to its patients and families as well as some of the services our group offers our patients and their families in addition to the requirements.  In order to accomplish the goals of hospice care, a network or hospice group is set up generally incorporating doctors, registered nurses, social workers, nurses’ aides, counselors, including clergy, and many volunteers and other support staff.  This is an interdisciplinary team and is required by Medicare to meet every 14 days to evaluate the current status of patients and design a strategy to meet the needs of the patients and their families.  The team approaches the patient and their caregivers as a unit and designs a flexible plan to provide not only medical necessities, but the practical and emotional needs of everyone involved in the dying process. I happen to be one of the over 500,000 volunteers nationally, like I said, a tiny speck.

I can’t figure out a way to fully describe hospice without a personal story, and as I feel bound by privacy not to discuss the people I work with, I’ll tell  one of my own in order to give everyone a familiarity with what I consider to be the valuable services hospice provides.  My association with hospice began in 1985 although I would not become a volunteer for several more years.  In May of 1985 my sister-in-law discovered the melanoma she’d been treated for a year and a half earlier had metastasized to her brain.  She was an unmarried career girl, age 35, and both her parents, my husband’s parents, were deceased.  After investigating all the options for treatment and care, she moved in with us as I was the best suited to care for her even though we had three young children and my husband worked about 12 hours per day.  She and I spent 6 weeks that summer traveling to UCLA several days a week for radiation as she progressively became more ill.  I don’t know what the statistics are now on survival rates for this type of cancer but at the time we weren’t very hopeful.  At the end of the six weeks her prognosis was dire and while there was an experimental treatment available to her, she and the rest of the family decided against it, and so she came home to die.

I won’t go into all the details of how our daily lives changed or the impact her illness had on us as a family, suffice it to say that 27 years later I still recall every tiny detail, some with affection and love and some with profound sadness.  I wasn’t aware of hospice until a nurse mentioned it to me on one or our many emergency room visits.  Generally we landed in the ER once or twice a week for a variety of ever changing symptoms and calamities that seemed to pop up in the middle of the night or on weekends.  I called our doctor’s office the next day and we were immediately contacted by the local hospice group.  I felt at the time as if we’d been thrown a life line.  Some of you may have experienced something similar in your lives but if not, it’s like receiving a gift you weren’t aware you were desperate for until it was given.  You know how sometimes you just keep moving forward, putting one foot in front of the other no matter how difficult it is, thinking you have no other choice but to struggle through by sheer will power?  That’s the way I felt, and then suddenly a hand reached out and said no, we’re going to take that walk with you.  It was remarkable, truly.

Two months later she was gone.  Even then they followed us around for another year offering counseling and the opportunity to share our thoughts and feelings with others in similar circumstances.  And that’s where I come in.  All volunteers and paid staff wear many hats in our hospice group, but my main job is helping families muddle through the grieving process.  I run two or three group meetings every month, am on call at the death bed if one of our nurses thinks my services are warranted and make monthly phone calls to keep in touch with some of our families as needed.  Occasionally I go out on the initial visit with our social worker if there is the anticipation that my advice will be helpful and also visit families when they seem to need a little extra support.  There are two of us who fill this need at our facility along with rotating clergy when requested.  And by the way our social workers are really on the front line of making sure we’re not bringing people into hospice too early or reluctantly.  Obviously, that wouldn’t be one of our goals.  When I’m not performing these duties, I sometimes answer phones, do filing and paperwork (there’s so much of it) or whatever else the office needs based on the level of staff we have at any given time.   I normally spend about 10 to 12 hours per week on hospice related activities.

I don’t talk about hospice very frequently, unless someone asks, as it’s almost another universe I live in when I’m working and when I come home I try to turn the intensity off.  Just in the past year we’ve begun to add children into our hospice group and it’s been a really tough transition for many of us.  Of course another reason hospice doesn’t come up in conversation very often is that generally people don’t particularly enjoy discussing the details surrounding death.

With all the recent changes in our health care delivery system and rising end of life costs, I think a clear understanding of hospice is beneficial, although I’m not convinced I’m the best one to provide it, as I don’t participate in the medical aspect of care or the cost analysis.  One of the requirements to become a hospice patient is to have signed an Advance Directive, and in some cases a Do Not Resuscitate order is also required, it is with our group, except for children.  In most cases once you’re in hospice it’s a “no-no” to change your mind, go back to treatment, and then later try to get back into hospice, although it’s not impossible.  They prefer to be the first ones called at all times in order to evaluate whatever medical issues arise and determine if outside help or treatment is needed.  We discourage calling emergency personnel unless absolutely necessary, as it generally leads to what we consider unnecessary hospitalization and can also affect your status as a hospice patient.  These are a few of the perceived negatives that I’m aware of and I do know from personal experience that there are some medical personnel who aren’t particularly supportive of hospice care, although I believe their numbers are possibly shrinking.  I try to stay away from hospice controversy, such as it exists, and just stay focused on the job and the people.  I’m what is called a hospice loyalist.

Sometimes I hear regret in our group sessions in the territory of, maybe we gave up too soon, which is entirely understandable and one of the issues we work through.  I tell my mother’s story occasionally.   She suffered from congestive heart failure and at the end of 2008 decided she was ready for hospice, but I wasn’t entirely convinced.   She died in early 2009 and after her death I found a letter she’d written to me in July of 2008 explaining that recently something had changed and she felt she was no longer able to keep up with the symptoms and was failing, and of course went on to tell me all the personal things only a mother can tell a daughter.  That letter meant the world to me.  Even hospice volunteers have doubts sometimes.

One of the lessons I’ve learned over the years is that if you’re afforded the opportunity and time to work through the dying process as a family, surrounded by loved ones, the grieving process for those left behind is much more manageable and the memories created during those last months or days can be just as poignant and cherished as memories from happier times.

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