The Palliative Journey

downloadWhen I tell people that my mom is now in palliative care, the assumption is that she is at a home receiving palliative treatment.  Most people do not know what palliative means, the root word of palliate, means to protect, to cloak.  Palliative care is whole person and family care that is central to health care.  Palliative care is not limited to end of life or terminal-stage care.  It’s available for people living with any illness, at any age or at any stage of an illness. (World Health Organization, 2012)

If you research the term palliative care, it is provided by a team of nurses, physiotherapists, physicians, occupational therapists and other heath care professionals who work alongside the primary physician and other hospital or hospice staff to provide support.  It is an important for end of life care, however it is not only limited to that stage.

There seems to be a distinction between palliative care and hospice care.  Hospice and palliative care both provide symptom relief and pain management.  Palliative care services are for those individuals that have serious and complex illnesses, whether or not they are expected to fully recover, live with the illness for an extended period of time or the disease is progressive.

Hospice is a type of care that involves palliation without curative intent.  It is used for individuals with no alternative options for curing their disease or in those individuals that have decided not to pursue options that are laborious, that are likely to cause more symptoms and not be successful.

I found this chart to see the differences in types of palliative care

  Palliative Home Care Community Care Access Centre (LHIN) Bruyère Continuing Care Palliative Care Unit (PCU) Hospice Care Ottawa (HCO)
Disease Status Presence of a progressive, lifelimiting illness (cancer or non-cancer) requiring palliative pain and symptom management Presence of a progressive, life-limiting illness (cancer or non-cancer) requiring specialized palliative pain and symptom and complex end-of-life care Presence of a, progressive, life limiting illness (cancer or non-cancer), and who are at the end of life
Prognosis <12 months There is no prognosis criterion for admission to Bruyère’s Palliative Care Unit Last days or weeks of life
Functional Status Palliative Care Approach where patient care needs can be supported with combined caregiver support and CCAC services in a safe community environment Management of complex and/or acute pain and symptom crises across the illness trajectory, including the end of life There is no requirement that a Do Not Resuscitate (DNR) order be in place Patients admitted have a primary goal of comfort care at the end of life Patients must have a Do Not Resuscitate (DNR) order in place at time of referral and end of life goals have been clarified with patient/SDM
Length of Stay Complexity that can be cared for at home Have complex needs that require intensive daily follow-up by a palliative care Physician Patients have care needs that cannot be managed in their home or do not wish a home death Patients’ needs are relatively low in complexity
Goals of Care Palliative Care Approach where patient care needs can be supported with combined caregiver support and CCAC services in a safe community environment Management of complex and/or acute pain and symptom crises across the illness trajectory, including the end of life There is no requirement that a Do Not Resuscitate (DNR) order be in place Patients admitted have a primary goal of comfort care at the end of life Patients must have a Do Not Resuscitate (DNR) order in place at time of referral and end of life goals have been clarified with patient/SDM
Examples of Care Needs (not exhaustive) • Nursing Care • Personal Support Services • PT, OT, SW, SLP, RD • Medical Supplies & Equipment • Ongoing Case Management In the community CCAC also offers; system navigation, linkages with Family Health Teams & community Palliative Care Physicians, RPCT and referrals to community resources (e.g. day hospice programs; in-home hospice volunteers; bereavement support). CCAC does not provide 24 hour/day care at end of life. Contact CCAC for further information Neuraxial block management (intrathecal or epidural) in the post insertion phase (greater than 24-72 hours) • Complex trach care • Indwelling chest or abdominal drainage tube • BIPAP & CPAP • Patients still receiving chemotherapy and radiation with palliative intent. • Switch/rotation to methadone • Initiate and titrate Ketamine • Management of complex wound care • Patients with severe agitated delirium • Total parenteral nutrition • Blood and platelet transfusion Stable Neuraxial block management in the maintenance stage (greater than 5 days post insertion) • Stable trach care • Indwelling chest or abdominal drainage tube • BIPAP & CPAP will be assessed on an individual basis • Patients no longer receiving chemotherapy and or radiation HCO does not accept; • Patients with active TB, C. difficile positive, wandering and/or exit seeking • Patients requiring enteral feeding or transfusions • Patients/families who pose a risk of violence or harm to self/others

Hospice Palliative Care Admission Criteria- March 7, 2016 https://champlainpalliative.ca/wp-content/uploads/2017/01/Hospice-Admissions.pdf

My mother has been in palliative care for the last 3 years, and according to the definition, she should be in Hospice, as her disease is progressive, and she is at the end of life.  However, to qualify for Hospice, you must be less than 6 months near end of life, which cannot be determined with my mom. If I decided to put my mom in Hospice, she would have been discharged, and then I would have given up all the home care that she receives now.  I don’t know where she would go after that.

According to research, approximately 60% of deaths in Ontario occur in hospital.  High rates of emergency room visit in the last weeks of life and the deaths in hospital are indicators of poor quality end of life care.  In 2008, 80 % of the 20,023 admissions of palliative patients to acute care beds in Ontario were through the emergency room. (Seow, 2009)

In Ontario, home care services help people with acute, chronic, palliative or rehabilitative health care needs to live in their community or to manage admission to a care facility when living at home is not a viable option.  Home care services include nursing, personal support, therapy, social work, medical supplies, equipment and case management.

Home care service delivered by a service provider.  The requirement to provide care to a family member at home at the end of life has a profound effect on the family.  Canadians estimate that it takes 54 hours per week to care for a dying loved one in the home. (Ispos-Reid, 2004) The family involvement depends on their availability to financially subsidize the home care program and the ability of the dying person to manage physical symptoms in the home setting.  People who receive palliative care in the home and their caregivers require around the clock care, as it is critically important, especially when it is the last few days of life.  If adequate palliative care services are not available when a patient requires it, they will likely go to the emergency department to get required care. (Auditor General of Ontario, 2014)

With all this research and statistics, nothing has changed.  It is up to the family to financially support the individual in the end of life stages, unless you are days away from death.  Although it is evident that having supports in the home, would save the health system and create less stress in the emergency departments, no changes are made. The entire palliative journey and hospice journey talks about a team and how the family and caregivers require supports, however it is only discussion.

The care management is left up to the caregiver.  There is no team, there are no additional care hours.  You must manage with the little that are given if your loved one happens to lack complications and just has a progressive disease, or so has been my experience.

 

References

Auditor General of Ontario. (2014). 2014 Annual Report of the Office of the Auditor General of Ontario, p 261.

Ipsos-Reid Survey. (2004). Hospice palliative care study: Final report. Ottawa: The GlaxoSmithKline Foundation and the Canadian Hospice Palliative Care Association.

 

Seow, H. 2009. The Use of End-of-Life Homecare Services in Ontario: Is it associated with Using Less Acute Care Services in Late Life? Dissertation. Baltimore, MA: Author.

caronleid

I believe you can learn something new everyday.

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