By  Dr. Mahjabeen Islam
Toledo, Ohio

February 23, 2007

All Care Should Include Palliative Care

 

Palliative care and hospice are deeply misunderstood concepts. And not just by lay persons.
Students of traditional medicine have been trained to cure: with medication or surgery. Healing has been felt to be synonymous with the stamping out of disease. I do remember being taught to “treat the patient and not the X-ray”. But I do not recall being taught to palliate and cure, just cure. And if I could not cure, I was only entitled to drown myself in a quick mental browbeating, a self-flagellation and a very private depression.
Palliative Medicine encompasses care when cure is not possible. Hospice is care of the terminally ill. Medicine has evolved through the ages and despite rapid advances and amazing surgical techniques, death has not been beaten. Hospice and Palliative Medicine are now sciences with their own standards of practice and research.
Preparing for Palliative Care Medical Directorship at St. Vincent Mercy Medical Center, I read a wonderful foreword in a book that said that “all care should be like palliative care”. The medical establishment, like an unwieldy giant, is slowly realizing the accuracy and importance of this premise. Many of its practitioners are unfortunately still stuck in the God-complex of cure alone.
One of the misconceptions is that palliative care applies only to the one with cancer. Statistics in the Palliative Care Unit at St. Vincent Mercy Medical Center reveal that COPD (chronic obstructive pulmonary disease, or chronic bronchitis/emphysema) and CHF (congestive heart failure) supersede cancer as the commonest diagnoses of patients admitted or transferred to palliative care.
The buzzword in palliative care now is “symptom-management”. COPD and CHF and many cancers are not curable. They should not mean a torturous end either. Neither should the patient with the diagnosis of end-stage COPD, CHF or cancer become hot-potatoes in the alacrity with which physicians palm them off to other doctors involved in their care. Frequently the oncologist feels that the family doctor should deal with pain and other symptoms, and the family doctor feels the oncologist should. Even sadder is the stoic patient who believes that pain is part and parcel of a serious diagnosis.
Palliative care and hospice aim toward a quality life as well as a serene death. The wonderful news is that both are totally doable, regardless of the gravity of the diagnosis.
The word “hospice” is derived from the Latin “hospitium” meaning an inn for travelers, so a resting place. The first hospice was started in England by Dame Cicely Saunders in 1940 and the first one in the United States was founded in Yale, New Haven, Connecticut in 1974. Since that time and especially over the last decade there has been a surge in the number and type of hospice services around the country.
There is also heightened interest in Palliative Care in hospitals across the nation. In fact having a Palliative Care Unit serves to distinguish a hospital from your run-of-the-mill facility with the usual trauma, cardiology and snazzy surgery services. Interestingly this heightened interest is fueled by that usual common denominator called the dollar.
Figures published in March 2004 about the Virginia Commonwealth University compared care of the patient during the last five days in the hospital, one set of patients were at a palliative care unit and the comparative set in a non-palliative setting. In the non-PCU setting $2267 were spent on drugs and chemotherapy, compared to $511 in the PCU. Laboratory tests took $1134 in the non-PCU setting and $56 in the PCU. Diagnostic imaging cost $615 in the non-PCU and $64 in the PCU. Medical supplies compared at $1821 and $731, non-PCU and PCU respectively. After the various costs were totaled including room and board, all the above and miscellaneous, the comparative total is startling: $12319 for non-PCU care and $5313 for PCU care.
all care outpatient and inpatient, serious chronic diagnosis or not, should not focus solely on cure. Palliation and quality of life should form an integral part of it. Until the antibiotic kills the pneumonia bacteria, the patient’s persistent cough should be treated with a sedating cough suppressant so that they can have sane nights.
Some very common misconceptions reign in Toledo and perhaps all over the United States in relation to hospice. One is that hospice care is always inpatient care in a facility. Actually, most hospice patients prefer to die at home, and do. Secondly, people think that hospice is meant only for the last four days of life. The fact is that the earlier the patient is referred to hospice after the diagnosis of a terminal illness, the better their months or year are. Consider I. R. a 70 year old patient of mine that had end-stage CHF, COPD as well as kidney disease. Prior to referral to Odyssey Hospice, the patient was admitted practically every week to the hospital with a very low potassium level. A very expensive workup ensued and it was recommended that she have exploratory surgery to define the cause of the low potassium. Her daughter refused the surgery, and the gravity and chronicity of her diseases made her an appropriate hospice referral. The discovery by the hospice nurse that whenever the patient felt short of breath, she would take many tablets of Lasix, a diuretic, but no potassium supplementation, ”found” the reason for her potassium being always dangerously low. Busted!
Now the patient’s breathing, mobility and mind have dramatically improved with the symptom management that, we have agreed, shall be our main focus. This is a classic case where curative efforts can clash with the quality of life.
Hospice care spans a spectrum: home hospice in which the patient’s physician can continue to be their family doctor, or else the hospice medical director can take over care. Either way the patient receives care from a visiting nurse, a home health aide, a social worker, a trained volunteer and pastoral care. Home hospice has the power to totally change a patient’s taste of life. And when this dramatic change occurs a few months or a year or so before death, the hospice philosophy has been successful in providing quality at death.
Hospice care can be provided at nursing facilities as well, with the same involvement of the above noted specialties. And it is not just pain that is treated but all and any symptoms that the patient might have, be it nausea, drowsiness, shortness of breath or any others.
A minority of patients has to be admitted to an inpatient facility, and this is usually during the last few days of life. Medicare has a hospice benefit and the burden on the patient is thus removed and even in a hospital environment, the bed can be converted to a “hospice bed” and the Medicare benefit applies.
The mindset of physicians is not just fashioned in medical training when they grow up with the sole focus on cure. Many of us are equal victims of the desire for immortality, sucked in even more by the glitz that Hollywood emblazons on youth, sprightliness and success. And then there can be unresolved personal issues around death and dying, manifested in the concentrated approach toward curing the disease and unwittingly ignoring the patient.
A very prevalent misconception among the medical community is that hospice is akin to the death knell, and so the patient is not referred as soon as a serious chronic disease diagnosis is made. This misunderstanding is fed by the narcotics and sedatives that are given by hospice to a patient at the time of death. Physicians have been heard to say “with hospice you give the patient a bunch of morphine and kill them”, or “hospice is just euthanasia” and “hospice just means withdrawal of all care”. Actually, not only has the patient been referred very late, the narcotics and sedatives compromise the patient’s ability to interact, and many die soon thereafter. The issue is not the medications required for patient comfort, but rather the very late referral.
If the referral had been made as soon as a serious diagnosis had been made, the focus would be on maintaining function, so narcotics would be given for pain management, but only to the point that pain is controlled and mentation not affected. If the majority of referrals to hospice are made too late, the only option at the time of very advanced disease is large doses of narcotics and sedatives, with no time for the development of tolerance, and at times the induction of a comatose state. It is important not to reject the entire philosophy on the basis of these late entrants to hospice.
For those patients and families who are tethered to a physician blinded to the benefits of palliative care and hospice, it is vital to remember that the referral to hospice can be made by anyone, medical or lay, patients themselves or else their families and friends.
This wonderful odyssey called life shines with the marvels of medicine. Palliative care and hospice should balm its glorious end.
(Mahjabeen Islam, MD is former medical director of the Palliative Care Unit at St. Vincent Mercy Medical Center and is currently medical director of Odyssey Hospice in Toledo)

 

 

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