February 2, 2008, is the one-year anniversary of my brother’s death, due to the collapse of his pulmonary function following complications from a kidney transplant. Because he couldn’t breathe on his own, following a failed final course of treatment for the pneumonia, the decision was made to remove his breathing tube. It took approximately three weeks from the time of his initial plea until he was at peace. Though Russell entered the Hospital with a Do Not Recessitate (DNR) and had instructions on what he would agree to for treatment, the process of allowing a patient to die on his own terms is not a simple one. My sister, an experienced hospice nurse, held his medical power of attorney. Once the family had gathered we discussed his wishes and everyone was in agreement. A meeting with a member of the ethics committee of the hospital was required, followed by explicit instructions for the transplant unit. With each shift change we needed to make sure the directives for no additional interventions were respected. The failure of a transplant patient is hard on everyone in the unit as the intensity of the care creates bonds between the patient and the staff. When the day came to allow my brother to pass, we surrounded the hospital bed, the anesthesiologist administered some morphine, and he breathed shallowly until he went from white to gray in the space of a few minutes.
Though we were all grateful that he was allowed to ease his suffering and die with dignity, the complexity of the process confounds those who must navigate the health care system. Even though we had several family members present with significant health care expertise, an entire family in agreement with the protocol, written Advanced Directives upon admission, and an informed patient, it was still mentally and organizationally difficult taking the final step. I note there was one family in the transplant unit, whose elderly father had been on life support one month prior to my brother and was still there when we left. The lesson is; though your paper work may be in order, you will still need to navigate each exchange in the care continuum with people who are trained to cure. Sometimes death is the only way to alleviate the suffering of a love one.
According to the Agency for Health Care Research and Quality, 36% of the health care expenditures in the United States are for Medicare patients, who comprised 13% of the population in 2002 and are expected to grow to 30% by 2030. Increasingly these patients are left to die in hospitals because there are no family members, absent family, or lack of facilities for patients requiring end stage of life care. We have plenty of conversations about quality of life in health care but what about a good death? Is being hooked up to machines, wasting away immobile, and suffering from bed sores a life of quality?
Alternatives to hospital deaths for the terminally ill include in-home hospice care, long term care facilities with hospice programs, private duty nursing, and of course, family member care. According to the Kaiser Family Foundation’s June 2007 report on Medicare Spending, 30% of all expenses paid in 2004 were for long term care facilities. The average cost per beneficiary was $12,763. Average spending in the last year of life was $22,107 for Medicare recipients. Only 2% of Medicare reimbursements went for hospice care, 4% for home health care and 5% for skilled nursing facilities in 2006. This means the balance of 19% of the long-term care expenditures went to pay for hospital services for patients with long-term stays. Given the growth in our Medicare population and the ability for hospitals to keep patients alive longer with increasingly invasive procedures, as a society we need to review the equity of this spending pattern and the efficaciousness for patient care.
One of the alternatives to inpatient acute care for the terminally ill is in-home palliative care. In July of 2007, the Journal of American Geriatrics published the results of a study assessing patient satisfaction for in-home palliative care versus inpatient care. The randomized trial was sited within two different HMO organizations located in two states, for patients who were diagnosed with a year or less to live. The study showed an increase in patient care satisfaction and a reduction in the use of medical services and corresponding cost of care for end stage treatments. Perhaps more importantly, the patients who received in-home care were less likely to visit the emergency department or be admitted to the hospital, than patients treated through typical acute care modalities.
One of the challenges in determining health care policy is to assign values to patient health and intervention outcomes. A Canadian study, published in December of 2006 reviewed valuation methods for assessing human life outcomes. The Canadian study suggested setting a common threshold of cost effectiveness that could be applied to all health care interventions. Since health care resources are limited, based on the ability to pay, either through taxes, premiums, or direct reimbursement, examination of the value achieved for a publicly funded health care program seems reasonable. Medicare data indicates that more than 16% of all health care expenditures is spent in the last month of life. Methods currently used in the United Kingdom and Canada include weighing year of life gained to the cost of the services. The legal community has become adept at valuing human lives for tort actions, so certainly the health care community can work towards a reasonable method for measuring value versus the cost of the intervention.
In March of 2007, Congressman Towns introduced a bill, Physician Assistants Continuity of Care Act, to allow Physician Assistants to order post hospital care, home health services, and hospice care under the Medicare program. The impetus for this action was a perceived delay in appropriate patient care because PA’s were not allowed to recommend these services. Not only would this provision provide continuity of care for the patient, but it would also save Medicare unnecessary expenses. The bill was voted down in March.
Barriers remaining to improve palliative care in hospital settings include quality of life and a dignified death. There are hospital based palliative care programs with specific programs for end-of-life treatments and demonstrated cost savings, as cited in the Evidence Base for Developing a Palliative Care Service article published in the Medsurg Nursing Journal in June 2007. These include the development of a multi-disciplinary support team for terminally ill patients, separate hospice wings for acutely ill and terminal patients, alignment of patient care with the patient’s wishes, and a hospital consulting service for the administration of palliative care off-site. The following criteria were listed as success factors of palliative care programs:
Early discussions on end-of-life procedures/processes
Patient outcomes include less time spent in intensive care units
Avoidance of unnecessary tests and procedures
Better pain management through measures linked to patient satisfaction surveys and medical record integration
Reduction in the length of stay
Reduction in hospital charges
Reduction in hospital readmission
In conclusion, since we have a huge population ready to become Medicare eligible and there are proven methods for addressing end-of-life care besides acute hospital settings, isn’t it about time the United States develops some standards for delivering appropriate palliative care to terminally ill patients?
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