From the Editor: Today, with the recent death of controversial figure Jack Kevorkian we revisit blogger Theresa Neumann’s thoughts on Palliative Care, End of Life and Hospice Care. The ethical questions raised by end of life situations are difficult for families to deal with and this blog provides an excellent primer.
In a previous blog, I raised the issue of “Advanced Directives” and how, according to a Medscape physician survey, physicians do not always honor these legal documents. One of the “excuses” cited the definition of futility in treating a terminal medical condition, arguing for palliative care as opposed to withdrawal of care. Obviously, confusion exists amongst these providers as to what constitutes comfort care versus unnecessary prolongation of life and/or exposure to unnecessary procedures in a patient with a terminal condition.
Palliative, End-of-Life and Hospice Care
Palliative care is essentially comfort care. To “palliate” means to “ease” or “make less severe” – therefore, medical care that is designed to palliate symptoms of a particular disease is care designed to ease or lessen the severity of symptoms associated with that disease. It can be in an acute condition, a chronic condition or even a terminal condition depending on the stage of the illness. Some of the symptoms often palliated are nausea and vomiting (chemotherapy, cirrhosis), anorexia (cancers, AIDS), pain (rheumatoid arthritis, cancers), shortness of breath (COPD/emphysema, interstitial lung disease), dizziness (Meniere’s disease, multiple sclerosis), incontinence (spinal cord injuries, stroke), constipation (inflammatory bowel disease, chronic pain syndromes), and many others. There are various treatments available for the treatment and/or management of these symptoms, but they are not necessarily curative of the underlying condition. Some chronic conditions, like Rheumatoid Arthritis, are manageable but not necessarily curable, so the treatment rendered is to palliate/lessen the symptoms and hopefully put the auto-immune disorder into remission for a period of time. Rheumatoid Arthritis, however, is NOT a terminal condition; patients usually die of complications or other co-morbidities. Palliative care can also incorporate a variety of specialties with overall coordination of care that involves communication with the family, spirituality and emotional support. Palliative care is a critical component of end-of-life and Hospice care.
End-of-Life care is a well-coordinated approach to end-of-life issues when a condition is deemed terminal, such as incurable metastatic cancer, end-stage multiple sclerosis or even liver cirrhosis when organ transplant is not an option. Life expectancy can vary widely, with physician guestimates being greater than 6 months (as much as one year or more). End-of-life care typically incorporates palliative care to ease the symptoms of the disease process as well as counseling services, emotional support and even spiritual support.
Hospice care is end-of-life care, incorporating palliative care, reserved for the last 6 months of life or less. Care is shifted from curative therapies to pain management and ease of other symptoms of illness. There are many Hospice programs that offer services in a variety of locations, all of which is dependent on the patient’s and the patients’ family’s wishes. They can be rendered at home, in a nursing home, in the hospital or in a dedicated Hospice facility. Services provided by these organizations can even include basic housekeeping, personal hygiene care, grocery shopping, and even companionship in addition to the palliative medical therapies.
Where do advanced directives come into play?
Advanced directives can affect every one of these aspects of care. They reflect the patient’s or the patient’s medical power of attorney’s wishes regarding palliative care modalities, end-of-life care and Hospice care.
About.com’s website on palliative care offers a great example of palliative care that transitions to end-of-life and at-home Hospice care for “Aunt Tilly”.
A patriarch of the family has essentially been healthy his entire life, shoveling snow and cutting grass into his 85th year of life. Things shift during the 86th year, and he develops congestive heart failure which has triggered multiple falls and syncopal episodes, presumably from hypoxemia. There are several hospitalizations to evaluate his condition with institution of multiple medical therapies/drugs to stabilize his condition. Unfortunately, his heart is weak, and ultimately his kidneys begin to fail. No advanced directives had ever been discussed, as with many people of his generation; fortunately, he remained of sound mind. At first, everything was a whirlwind……medication infusions to prevent irregular heart rhythms, blood transfusions to address his anemia since the kidneys were no longer working properly to stimulate the bone marrow to make more red blood cells, and finally, dialysis??? Well, if the kidneys are not working very well, not filtering the blood to produce urine and not stimulating the bone marrow to produce RBCs, we have to fix this, right? What was not mentioned was that blood transfusions have to be given with intravenous fluids, which then worsen the fluid overload and congestive heart failure making it even more difficult for the poor man to breathe. Higher and higher amounts of oxygen are needed to keep him comfortable, while his body is swelling up with fluids. So, STOP THE MADNESS! This family patriarch, after being informed of the complicated nature of his essentially end-stage condition, opted to forego hemodialysis; he did not want to be hooked-up to a machine for 3 hours a day, 3 days a week, just to filter his blood in an attempt to garner perhaps 6 more months of life; that kind of life had no quality to it in his mind. In addition, since the blood transfusions would only worsen his breathing, he refused any more blood. He wanted to be kept comfortable with pain medications and oxygen which was done in the hospital; he did not want to be shocked (defibrillated) or resuscitated in any way. Comfort measures were provided in the hospital where he was given a large, private room, and he passed away peacefully within 3 days; there were no restrictions on family visitation, and he was surrounded by those dearest to him. A chaplain was available within minutes of his death to comfort the family and offer prayer to ease everyone else’s suffering and loss; this patriarch was already at peace and without pain.
In this particular example, it was beneficial that my family member was of sound mind to make his own decisions at the end of life with regard to blood transfusions and hemodialysis. It would have otherwise been very difficult for the family to come to some kind of consensus. It was also better, in this case, that he remain in the hospital since his wife was still living and would have to return to their home alone following his death; having her live in the house in which her husband of 67 years had died would have been too much for her to bear. This emphasizes the importance decision-making while one is of sound mind. Cancers can spread to the brain; toxic metabolites that accumulate when vital organs fail can render a patient confused or even comatose; acute strokes can also affect one’s cognitive capabilities, not to mention other organ systems (breathing, toileting, swallowing, etc.).
Advanced directives can be as precise or as vague as one desires. It seems to me that the more detailed the directive, the less chance one encounters of a physician or care provider ignoring the directive or “interpreting” the directive in a way that confuses loved ones, exposing the patient to unnecessary procedures and/or life-extending treatments.
Have you ever had to deal with any of these issues – advanced directives, palliative care, end-of-life care or hospice care? What has your experience been? Do you have any suggestions that might be helpful to others, who may be faced with similar issues?
More on this topic soon: What constitutes a terminal condition?
Making Your Wishes Known at the End of Life (NY Times article by Dr. Pauline W. Chen )
Image from mylocalhealthguide.com