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2 Kinds of Information about Hospice and Palliative care

1) From a medical perspective, hospices provide palliation of symptoms for patients with terminal illnesses after patients realize that there is no realistic chance that treatments designed to cure the disease will be helpful. Approximately two thirds of hospice patients receive the care in their homes and another third receive the care in inpatient settings. Some patients mistakenly believe that they can just be “put to sleep” in a hospice facility, but that is simply not true in the USA. Hospices can provide access to sedative and narcotic drugs at doses calculated to provide relief from pain and other symptoms. Most doses are administered orally or rectally, making them easy to be administered at home by family members. But, even when the drug doses are being administered intravenously using a device activated by a button the patient can push, the device keeps track of the cumulative dose over time. The device is set to delay administering more drug until it becomes safe for an additional dose. In states where laws permit “death with dignity,” hospices provide the services described above at home, but they do not provide assistance with taking the medications prescribed for “death with dignity.” That dose is usually taken at home without hospice staff present. There are lots of good reasons for you to enroll with a hospice as soon as you meet the “six-month to live” qualification requirement because the hospice team evaluates your situation, and the team can provide much-needed supportive help for up to 6-months before death is expected to finally arrive. In fact, some patients improve so much while they are receiving hospice services that the periodic required evaluations lead to extending the hospice coverage beyond 6-months or even to temporarily discontinuing hospice services until the patient later takes a turn for the worse, at which time hospice care can be re-instituted.

2) From a financial perspective hospice care and palliative care are provided by multiple different local entities. The two terms often refer to care provided by very different entities with vastly different charges to the patient. Palliative care can be started before patients meet criteria for hospice care and while patients are still seeking curative treatment. So, it is wise to compare the services and charges of providers in your area. You may find major differences in the charges for which you will be held responsible, especially when insurers decide that planned services are futile. For example, you may find that there are extensive charges for staying in an in-hospital palliative care unit for which you will be held responsible if charges exceed your insurance or Medicare coverage. So, there can potentially be financial consequences for persisting with treatment for your illness once there is no realistic chance that the sought-after treatments will provide help. On the other hand, once you meet the criteria, you may be lucky enough to find a nonprofit hospice in your area whose services are totally covered by Medicare and charitable donations.

References

American Medical Association: AMA Ethics Guideline 2.035. Futile care. http://www.ama-assn.org/ama/pub/category/2830.html

American Medical Association: AMA Ethics Guideline 2.037: Medical futility in end-of-life care. http://www.ama-assn.org/ama/pub/category/2830.html

American Thoracic, Society: Withholding and withdrawing life-sustaining therapy. Ann Intern Med 115:478-485, 1991.

General Medical Council: Withholding and withdrawing life-prolonging treatments: Good practice in decision-making. http://www.gmcuk.org/guidance/current/library/witholding_lifeprolonging_guidance.asp

Matsuyama R, Sashidhar R, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 24:3490-3496, 2006.

McCabe, M. S. & Storm, C. When Doctors and Patients Disagree About Medical Futility. Journal of Oncology Practice, 4, 207-209. doi: 10.1200/JOP.0848503

Veatch RM, Spicer CM: Medically futile care: The role of the physician in setting limits. American Journal of Law and Medicine, 18, 15-36, 1992.


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