HCR -- Hospice, Palliative Care and Advance Directives

I received word last night of another death -- a sad, tragic story of a woman in her fifties dying from cancer and suffering to the very end. Like a broken record, this post is my way of spreading the word that although dying is inevitable, the suffering part can often be minimized or eliminated altogether.

Mortality is not optional but suffering often is.  Here is one of my favorite videos making that point.



Working the last eleven years in senior care has made more more aware than most about resources available at the end of life. Here is a link to a tiresome long collection of readings I put together a few weeks ago which I recommend anyway. Scan and browse to see if anything catches your eye.

One of my most visited posts regards a proposal to create a National Caregiver Corp modeled after the Peace Corps or Vista.

I have become an evangelist spreading the word about the importance of a Medical Advance Directive for everyone, especially anyone sixty or older. Compared with a properly filled out advance directive, the so-called living will is virtually worthless -- too little, too late.

Laws differ among the states and health care is constantly changing for many reasons, including insurance regulations, legal and professional standards as well as scientific advances. Preparing for getting old and dying affects nearly everyone but unfortunately most people don't want to think about that subject. And those who do are often thinking about someone else's death, not their own. Here is a list of links to medical advance directives for individual states. I have not looked closely at others, but the one for Georgia is excellent. 

Click to enlarge.

Here is another video summarizing in four 

categories the many causes of death. 

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16 questions to ask when choosing a hospice

NAOMI NAIERMAN, MPA AND MARSHA NELSON, ACSW, MBA | PATIENT | JUNE 28, 2014



Hospice is a set of services that we all may need someday — if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these questions will give you clues about quality of care and help you make an informed assessment.

What do others say about this hospice? Get references both from people you know and from people in the field — e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided. Anecdote and word of mouth won’t paint a full picture but they are still valuable data points.

How long has the hospice been in operation? If it has been around for a while, that’s an indication of stability.

Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.

Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.

What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.

Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?

Can the hospice meet your specific needs? Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns.

Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.

How rapid is crisis response? If the family needs someone to come to the home at 3AM on a Saturday, where would that person come from? What is their average response time?

What are the options for inpatient care? Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.

Under what circumstances are “respite” care and “continuous” care provided? In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask under what conditions the hospice provides these types of care.

Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/nursing.

How are patient/family concerns handled? Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?

How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.

What are your general impressions at initial contact? What is your reaction to the people you talk to?

What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters.