Galveston County Daily News March 5, 2013
Dr. Victor S. Sierpina
Hospice is a team of dedicated, trained professionals who assist patients and their families through the transition from chronic, end-stage disease and the process of dying.
At a talk I gave this past weekend to the Dame Cicely Saunders Society Hospice Training for hospice volunteers, I was reminded of the vital role hospice plays in our lives and deaths.
My father, at 91 years old, was on hospice care for an untreatable kidney tumor for the last three months of his life.
All of his medical needs were cared for, including costs of medications, special equipment, visits from nurses, doctors, physical therapists, social workers, a spiritual support team, even someone to bathe him.
The hospice nurse kept in close touch with us. This turned out to be vital as his decline was during the same time Hurricane Ike had destroyed our home.
We were balancing rebuilding our life here in Galveston while shuttling to Phoenix to spend as much time as we could with him before he passed away.
He did so peacefully, gracefully and with dignity, free of pain and surrounded by friends and family at his home a month after Ike.
If it hadn’t been for hospice, the process would have been much more challenging for him and all who loved him.
There are many misconceptions about hospice preventing effective use of this resource. Incredibly, about 30 percent of the Medicare budget is spent on those in the last year of life, often on procedures, hospitalizations and care that ultimately does not affect their outcome.
Hospice referral by the patient’s primary care doctor, a nurse, social worker or the person’s family can make a wonderful difference in the dignity and appropriateness of end of life care.
Hospice care is primarily provided in the person’s own home, though sometime short stays in the hospital or nursing home can be appropriate. It is covered by Medicare and other insurances and includes the full spectrum of palliative care.
Attempts to cure the patient are deferred in preference to improving quality of life, optimizing pain control and providing psychosocial and spiritual support to the patient and their family.
Sadly, hospice referrals are often too late, averaging around three to four weeks or less before death when three to six months may have been a more appropriate time for this care.
Sometimes this is because of the misunderstanding, so often stated to me by patients and families that hospice referral means giving up and no further care will be provided.
This is far from the truth, as hospice services provide more intense and medically appropriate levels of care at a much lower cost and decreased emotional burden for the person and their family. House calls are key to the effectiveness of this care.
End-of-life planning is not done best at the end of life. Signing an advanced directive and medical power of attorney are optimally done by the patient and their family members well in advance of a critical event such as a stay in the intensive care unit or the discovery that a cancer has recurred and is now incurable.
Hospice patients need not have cancer either. Any person with a life expectancy of six months or less can enroll in hospice. Conditions such as end-stage organ disease such as chronic lung disease, heart failure, kidney or liver failure, dementia, failure to thrive and general decline can qualify a person for hospice.
The paradox reported many times is that under hospice care, the six-month ticking clock is often extended, sometimes to several years because of the quality care provided.
Hospice services can be renewed almost indefinitely if the patient continues to do better than expected.
Over the years, it has been my privilege to be present not only at birth’s beginning life but also with those during their last breath ending life. These are both profound bookends to the human experience and both must be handled with compassion, caring, competence and love.
Here are some key points I hope you consider:
• When you or a loved one is facing the inevitable, imminent end of life, enroll sooner rather than later in hospice.
A few months is better than a few weeks and you may even survive longer with more dignity, independence and in a healthier state.
• Complete Advanced Directives and Medical Power of Attorney documents available from your doctor, attorney or online.
File these with your primary care doctor and hospital well in advance of when you think you might need them. They can always be amended if situations change.
• Let your family know clearly while your mind is clear and health reasonably good of your wishes about end of life care.
“Doing everything you can” is not always the best choice while “doing everything reasonable” might be a better option.
Discuss this with all involved parties until it is clear what your intentions and wishes are and how you would like them carried out.
• Palliative care under hospice ensures, as far as humanly possible, that your needs for pain control, attention to suffering and your physical requirements are met in the most desirable, professional way — typically in the comforting surroundings of your own home and family.
Dr. Victor S. Sierpina is the W.D. and Laura Nell Nicholson Family Professor of Integrative Medicine and Professor of Family Medicine at UTMB