Thursday, September 18, 2008

An Isolated Patient Who Wants to Die at Home


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By Justin Engleka, M.S.N., C.R.N.P.
Vol 1, No. 2 - August 2001
(Original PDF*)
Case:

Mary was a 58 year-old woman who was admitted to the hospital for management of a wound infection. Her past medical history included severe peripheral vascular disease, and she subsequently had bilateral, above-the-knee amputations. Her stumps were very necrotic, and did not respond well to antibiotic therapy. To further complicate her story, a routine imaging scan found suspicious lesions on both her lung and liver. This finding was highly suspicious for metastatic cancer since she also had a smoking history, significant weight loss and decreased appetite. Mary’s primary physician encouraged her to pursue a cancer workup, but she refused. She also decided that she did not want to pursue any other aggressive medical therapies that may prolong her life. Her only goal was to go back to her apartment where she could die in peace. The palliative care service was asked to become involved to help with discharge planning.

Since Mary previously lived alone, this was going to be a very difficult task. During her hospital stay, she became increasingly delirious, and it was clear that she would not be able to return home. We attempted to contact all of her relatives to recruit help. No one was able to take responsibility for her care at home, even with hospice assistance. So we attempted to make her hospital stay as pleasant as possible while these complicated issues were sorted out. We recruited a volunteer to sit with her several times per week to keep her company. Her delirium and agitation improved with the use of antipsychotics. Her pain had also improved after careful titration of her opiate and adjuvant medications. We also paid for a beautician to visit her here in the hospital. Mary was ultimately discharged to a local skilled nursing facility. To ensure continuity, our medical student on service wrote a letter to the attending physician there. We included some of the details of the care that we provided. We suggested that it would be very appropriate to provide Mary with some “luxuries” that would normally be contraindicated in her care such as milkshakes or ice cream.

Discussion:

Patients who do not have family or caregivers can create very challenging situations for hospital staff. Under usual conditions, palliative care extends the focus of care to family and friends of the dying patient. Family members are encouraged to create a home like environment in the hospital. Family photos, favorite music, or a blanket from home can make a hospital stay more pleasant. Patients that are alone often miss the comforts of home. According to Ferrell & Coyle, 2001, the discipline of palliative care provides physical, psychological, social and spiritual support to help the patient adapt to the anticipated decline, associated with advanced, progressive, incurable disease. Palliative care also alleviates isolation through a commitment to non-abandonment, ongoing communication, and sustaining relationships. The role of the volunteer and the medical student in this case was crucial. Volunteers are an integral part of the hospice and palliative care philosophy and approach. Beyond extending the available personnel, volunteers put a truly human, non-professionalized face on the provision of care.

References:

1. Ferrell, B.R., and Coyle, N. Textbook of Palliative Nursing. 2001. Oxford University Press, New York, 684.

2. Mount, B.M. Volunteer support services: A key component of palliative care. Journal of Palliative Care, 1992, 8(1):59-64. (no open access pdf)

9 Responses to “An Isolated Patient Who Wants to Die at Home”

Drew Rosielle MD said...
September 19, 2008 at 9:15 AM

When I was a fellow I remember being shocked a few times realizing that the patient in front of me was not grief-stricken/miserable because I told them they were dying and time was short but because I told them they can't go home for whatever reason.

There's an interesting ethics discussion about this topic (allowing dying people to go home even when it's very unsafe) in Postgrad Med J here:

http://pmj.bmj.com/cgi/content/abstract/83/984/643


Christian Sinclair, MD said...
September 20, 2008 at 2:23 PM

This issue of patient autonomy, and even allowing a patient to make a very bad* decision is very stressful to most hospice and palliative care teams I know of. It often takes lots of conversations before a team accepts that in the patient's POV going home to a bad environment may be the best decision.

It is awlays helpful to explore motivations for what are considered to be bad decisions. That exploration needs a foundation of trust and a hopefully an established relationship if one is to get any real answers about motivation.

*in others point of view


Anonymous said...
September 25, 2008 at 4:10 PM

I'm a hospitalist with a question regarding autonomy- I hope this is the appropriate place to ask- but I am encountering problems discharging patients who want to go home to independent living or assisted living facilities to die with 24 hour cargivers and hospice in place, families supportive of hospice/comfort based care, yet the facilities, citing District of Columbia law, refuse to allow it because patients with stage III or IV sacral decubs are not allowed in their facilities. I told them I was sure there was an exemption for hospice patients, but they are asking me to prove it! Has anyone out there dealt with this or similar issues? They are saying I must place her in their skilled nursing facility, and she is frightened of going back there, requesting nothing but going home. Thanks for any input.


Christian Sinclair, MD said...
September 26, 2008 at 10:13 PM

Anon,

Your bring up a situation that may becoming more and more common. Besides hospitals and emergency rooms, there is a right of refusal with other medical care facilities (nursing homes, long term acute care hospitals, assisted living facilities, etc.). Those facilities don't face EMTALA laws that require them to treat or care for anyone they do not want to care for.

Often they may refuse under the mischaracterization of local/regional laws/rules, etc. But to my knowledge no state makes admission criteria based on existing medical issues including wounds. The interesting thing is wounds may be the main reason some people need more intensive nursing support in a nursing facility then can be done at home.

The fear of wounds comes from the demerits from the state that can bring fines, sanctions, and possible closings of nursing homes so you can somewhat understand where the refusal might seem justified on their part to continue their current standard care. But none of this has an air of common sense especially when dealing with preexisting wounds.

I would strongly encourage you to look into hospice inpatient facilities in your area, or maybe work together with some of your local hospice agencies to identify nursing facilities that are more likely to look at the whole picture.

I hope this was a helpful reply.


Anonymous said...
September 28, 2008 at 6:05 AM

Yes, and thanks. I may be a skeptic, but I believe their refusal of her into their assisted living is because they will receive more medicare reimbursement if she comes there under snf than being cared for by family-paid caregiver in assisted living for the few weeks she has left.


Christian Sinclair, MD said...
September 28, 2008 at 1:43 PM

Well the issue for Skilled care in a nursing facility versus Hospice in a nursing facility for a dying patient is a tough one and the finances of the matter play a big role in it for facility and for family/patient.

When you go skilled the patient/family have less out of pocket expenses since room and board is covered ($150-250/day). But at the same time everyone acts like the patient is going to do rehab, when they likely cannot or do not want to which reinforces the 'maybe he will get better, so we don't have to worry/think about this dying stuff' feelings of staff, patient, and family.

This is a real tough issue that I rarely see talked about in print in the hospice world, but ask any hospice or palliative care team and they will tell you it is a huge bureaucratic nightmare.


Anonymous said...
September 29, 2008 at 10:44 AM

Thanks for your comments- I couldn't agree more. As a hospitalist, care for frail geriatric patients is a mainstay of my job, and helping patients and families make the transition from reflex hospitalization/aggressive procedures to comfort based care when indicated is made SO much more difficult by the complexities of Medicare and nursing homes. The DC Dept of Health today rendered a verdict to this particular nursing facility and my patient's family that yes, DC Law does preclude admission of a patient to an assisted living or independent living facility who has a stage III or IV sacral decub even if the person is in Hospice care and has a family paid caregiver in place 24 hours a day. They say that long term care in their SNF is the only appropriate place, even though there is no further care outside of wet- dry dressing changes for the wound, done just for comfort. I don't know if the DOH is actually going to enforce this, but the nursing home has the answer it wants (to place her in their snf instead of her own independent apartment). I think most other care facilities are more reasonable and look the other way, but I can see this issue affecting other patients as well. I hope our local hospice organizations will tackle this one. This is a terrific web sight by the way, and thanks for your input.


Anonymous said...
March 13, 2011 at 4:31 AM

Thanks for your comments- I couldn't agree more. As a hospitalist, care for frail geriatric patients is a mainstay of my job, and helping patients and families make the transition from reflex hospitalization/aggressive procedures to comfort based care when indicated is made SO much more difficult by the complexities of Medicare and nursing homes. The DC Dept of Health today rendered a verdict to this particular nursing facility and my patient's family that yes, DC Law does preclude admission of a patient to an assisted living or independent living facility who has a stage III or IV sacral decub even if the person is in Hospice care and has a family paid caregiver in place 24 hours a day. They say that long term care in their SNF is the only appropriate place, even though there is no further care outside of wet- dry dressing changes for the wound, done just for comfort. I don't know if the DOH is actually going to enforce this, but the nursing home has the answer it wants (to place her in their snf instead of her own independent apartment). I think most other care facilities are more reasonable and look the other way, but I can see this issue affecting other patients as well. I hope our local hospice organizations will tackle this one. This is a terrific web sight by the way, and thanks for your input.


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

Well the issue for Skilled care in a nursing facility versus Hospice in a nursing facility for a dying patient is a tough one and the finances of the matter play a big role in it for facility and for family/patient.

When you go skilled the patient/family have less out of pocket expenses since room and board is covered ($150-250/day). But at the same time everyone acts like the patient is going to do rehab, when they likely cannot or do not want to which reinforces the 'maybe he will get better, so we don't have to worry/think about this dying stuff' feelings of staff, patient, and family.

This is a real tough issue that I rarely see talked about in print in the hospice world, but ask any hospice or palliative care team and they will tell you it is a huge bureaucratic nightmare.