Cancer Diary: Where to Hospice
This post follows up on an earlier Cancer Diary post on whether or not to choose hospice help, when and where.
Choosing between in-home hospice care and care in a facility is a deeply personal decision that depends on various factors, including the patient's medical needs, the capabilities of caregivers, and the resources available. It also may depend upon the relationship between the patient and caregiver, whether it is a spouse or an offspring who is providing the care. While many patients express a desire to spend their final days at home, it's essential to understand both the benefits and the challenges associated with each option.brighthh.com
Carl so adamantly wanted to be at home and so hated the two short visits he had made to a care facility that I agreed to take on the caregiving, but it left a lot of emotional scars and question marks about whether we had thought things through adequately. The answer of course, is no. The question had to be answered almost immediately since he was in a short-term care facility when the doctor determined that the chemotherapy was in effective and no effective chemotherapy was effective. It is a very short and challenging end of life. Carl weighed almost 300 pounds. I weighed half of that. He was a foot taller than I was, and his strength was gone. He could do nothing to help, and in the end he expected me to do it all. Although I am strong, moving him took at least an ounce more than I had, but I found it somewhere. Near the end, we were able to obtain a Hoyer lift, but it took time, and I had to fight for it. Carl died the way he wanted to--at home, with everyone around him, actually in the same room at that time. That clearly would not have happened with hospice care in a facility. For me, knowing the level of exhaustion I felt, the effects of sleep deprivation on me during those last months, and the irritation that comes with caregiver burnout, I, at least right now, would choose a facility, to make the fewer interactions burden-free. Better quality, I think. But I have had the opportunity of experiencing at least one of the two choices, the in-home care variant.
With this experience in mind, I asked ChatGPT to prepare me a comparison. I like it. It would have been helpful to have before Carl needed hospice. I hope it will help someone having to, alas, make that decision now.
In-Home Hospice Care: Comfort and Familiarity
In-home hospice care allows patients to remain in a familiar environment, surrounded by loved ones. This setting can provide a sense of peace and dignity during the end-of-life journey.
Benefits:
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Personalized Care: Care plans are tailored to the individual's needs, allowing for flexibility in routines and preferences.
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Family Involvement: Family members can play an active role in caregiving, which can be meaningful for both the patient and the caregivers.hospicecareagencies.com
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Cost-Effective: In many cases, in-home hospice care is less expensive than facility-based care, especially when considering room and board costs.brighthh.com
Challenges:
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Caregiver Responsibilities: Primary caregivers, often family members, are responsible for daily care tasks. This can be physically and emotionally demanding, especially if the caregiver is elderly or has health issues.
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Limited Professional Support: Typically, hospice staff visit 2-3 times a week, with limited availability on weekends. This means caregivers must manage symptoms and provide care between visits.
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Home Adaptations: The home may need modifications to accommodate medical equipment, such as hospital beds or wheelchairs.
Hospice Care in a Facility: Comprehensive Support
Hospice facilities offer 24/7 medical support and are equipped to handle complex medical needs, providing peace of mind for families who may be unable to provide intensive care at home.
Benefits:
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Round-the-Clock Care: Facilities have medical staff available at all times to manage symptoms and provide immediate assistance.
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Relief for Caregivers: Families can focus on spending quality time with their loved one without the stress of caregiving responsibilities.
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Access to Medical Equipment: Facilities are equipped with specialized medical equipment to manage complex health issues.
Challenges:
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Less Personalized Environment: Patients may have less control over their daily routines and may feel less comfortable in an unfamiliar setting.
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Cost Considerations: Facility-based care can be more expensive, and not all costs may be covered by insurance.brighthh.com
Special Considerations
Physical Limitations of Caregivers
In situations where the caregiver is physically unable to assist the patient—such as a petite spouse caring for a larger patient—providing adequate care at home can be challenging. Tasks like lifting or repositioning the patient may pose risks to both parties. In such cases, facility-based care or additional in-home support services should be considered.
Availability of Hospice Staff
While hospice staff are available for emergencies, routine visits are typically limited to a few times per week. This means that caregivers must be prepared to manage care during off-hours, including weekends. Understanding the level of support available is crucial when deciding on in-home care.
Resuscitation Policies
Hospice care focuses on comfort rather than curative treatments. As such, patients often have Do Not Resuscitate (DNR) orders in place. It's important to have clear discussions with healthcare providers about resuscitation preferences and ensure that all legal documents reflect the patient's wishes.verywellhealth.com
Making the Decision
Choosing between in-home hospice care and facility-based care involves assessing the patient's medical needs, the caregiver's capabilities, and the resources available. Open communication with healthcare providers, hospice organizations, and family members is essential to make an informed decision that honors the patient's preferences and ensures quality end-of-life care.
For more information on hospice care options and to compare providers, you can visit the National Hospice and Palliative Care Organization.
For more posts about hospices, click HERE.
For more Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
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