Thursday, January 15, 2009

Coordination of Care for People at the End of Life


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By Linda A. King, MD and Nicole Fowler, MHSA
Vol 1, No. 8 - March 2002
(Original PDF)
Case:

A 67-year-old man with end-stage congestive heart failure presented to the hospital with worsening respiratory distress and was intubated in the emergency room. Despite a week of intensive efforts, he could not be weaned from the ventilator and remained dependent on intravenous dobutamine for blood pressure support. The ICU staff met with the patient and family to discuss the medical situation and options for care including withdrawal of life support. The patient did not want to continue on long-term ventilatory support nor did he want to die in the hospital. The patient expressed to the care team a strong desire to leave the hospital and to die at home.

A palliative care consultation was initiated to support the patient and family and to assist with a discharge to home. The patient, family, ICU team and palliative care team discussed potential options for discharge and decided on a plan to transport the patient home with ongoing mechanical ventilation and inotropic support. This option allowed the patient to be comfortable at home with his family before removing the ventilator and providing medications for comfort that would likely be sedating. Efforts to carry out this plan were hindered by the reluctance of home care and hospice agencies to participate in this “unusual” and expensive plan that provided little or no reimbursement (i.e. withdrawal of life-support in the home setting while the patient continued on Dobutamine).

Following hours of coordination and planning, the physician from the Palliative Care service and a nurse from the ICU rode home in the ambulance with the patient where they were met by many of the patient’s family and friends and a private duty nurse to support the patient and family. After a few hours of visiting with his loved ones, the patient indicated that he was ready for the ventilator to be withdrawn. Intravenous morphine and ativan were administered until the patient was comfortable, then the endotracheal tube was removed. Additional medication was administered intermittently to maintain adequate comfort and the patient died comfortably at home a few days later. The family expressed their gratitude that the patient’s wish to die at home was achieved.

Discussion

For many patients facing a life-threatening illness, death at home is viewed as a desirable and even essential element of a “good death.” Patients in the hospital expected to die imminently after the withdrawal of life-support do not typically have this option because of the obstacles and lack of payment incentives for coordinating this type of care. Withdrawal of life support in the home can provide patients and families with the opportunity to achieve their goal of dying in the familiar setting of their own home at a lower cost than the average cost of care in an ICU.

However, in our current care system it requires extenuating circumstances and significant coordination and planning to assure that patients and families are well supported and the patient’s comfort is maintained. When the goals of care shift for seriously ill patients from a disease-specific and curative approach to an approach that focuses on comfort, symptom management and other personal preferences for care (such as wanting to die at home), the health care system is often inadequate and discontinuous. One reason, as in our highlighted case, is that “ownership” for this type of coordination does not exist and few providers (home care and others) are willing to assume this role because most insurance programs (such as Medicare) will not pay. Since most care is reimbursed according to location, it is difficult to provide comprehensive services that meet the changing goals of patients as their disease progresses.

Public policies and financial incentives that encourage and reward hospitals, home care agencies, nursing homes and hospices for seamless care need to be established. Surely to compliment our modern care system and life prolonging technologies we should be able to develop a reliable and sustainable system that also relieves symptoms, honors preferences and supports patients and their families at the end of life.

References:
1. Lynn, J. Serving patients who may die soon and their families. JAMA 2002;285: pp. 925-932.
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5 Responses to “Coordination of Care for People at the End of Life”

Emily said...
January 16, 2009 at 2:31 PM

Wow, good case. I'm an ICU nurse and I think if I mentioned this case to most of our docs they wouldn't even believe it. Sad to say I can't really see this happening in our hospital. I feel that most times our doctors (especially pulmonologists) are glad to wash their hands of a case once the patient doesn't want to be kept alive any longer. I'm glad that this was made possible for this patient & their family.


Christian Sinclair, MD said...
January 16, 2009 at 9:25 PM

I really liked this case when I first read it as well. It demonstrates a human to human connection and a complete exploration of all options. \

Another important component it the 'stepping up to the plate' component. Many medical professionals stop short of practicing all of their fully licensed skills, because that is someone else's job/role, etc. But when that job or role is not being fulfilled it is not always right to just turn your back and walk away.

Something that is not mentioned but would need to be a consideration is the discussion about the scope of malpractice coverage. The family may really appreciate you when things are going right, but if something went wrong, it would be very easy to draw up a case with lots of evidence from your peers saying they would have no part in this.

Thanks for your comments Emily! Keep em coming.


sharonccurn said...
April 9, 2009 at 1:46 PM

I have to say, of all the case studies I have read here on Pallimed, this one hits home the hardest for me. Not being able to fulfill a patient's final wishes is frustrating and demoralizing. This case study should be a shining star example of what we can do for a patient and their family, not an exception to the rule. Our medicare system is - well, crazy. I understand about "malpractice" in a situation such as this, but really, is it any less of a liability having a tubed patient "fly" for CT scans, etc.? The patient's final wishes are to be at home, not to die in the hospital. Not taking the risk of "bad things" happening by sending a patient home who is on a vent seems a moral issue when you consider that "bad things" happen in controlled environments, like the CICU, all the time. I know, I've worked there just short of forever. Thank you for the gems to chew on.


Christian Sinclair, MD said...
April 12, 2009 at 4:16 PM

Thanks for the comments Sharon. Over the past few years I think I am finding less families considering taking a loved one home, even if that is the desired wish of patient and family. There is a concern about being too difficult to give all the proper care at home. I don't know how to measure this trend on a larger scale, but just my experience.

I get excited about cases like this because of all the creative solutions and goodwill that can form as a result of fulfilling someone's dying wish.


Christian Sinclair, MD said...
March 13, 2011 at 4:31 AM

Thanks for the comments Sharon. Over the past few years I think I am finding less families considering taking a loved one home, even if that is the desired wish of patient and family. There is a concern about being too difficult to give all the proper care at home. I don't know how to measure this trend on a larger scale, but just my experience.

I get excited about cases like this because of all the creative solutions and goodwill that can form as a result of fulfilling someone's dying wish.