For this reason, I have been attending the CHPCC, having helped prepare for it Monday.
I was happy to help prepare badges and stuff bags for the Canadian Hospice Palliative Care Association Conference in Ottawa this week. Many hands make light work. Most of you know my mother died of cancer, and my father, a brain tumour. This journey is the topic of my book, and Hospice is the focal point of my volunteer work.
I was quite pleased to moderate a session meeting of the Long-Term Care interest group.
This group met at the pre-conference sessions on Thursday, October 28. Firstly, I introduced the session, asked participants to give some information on their backgrounds and then I posed the question:
What do you think is the most significant barrier to have a good death in long-term care?
Partly, I wanted to pick their brains, as participants were movers and shakers from across Canada. Also, while we know what we do right, it is important to deconstruct current conditions to prepare for the Silver Tsunami.
The answers were not surprising. The overarching principle - the main barrier, is COMMUNICATION.
- between all participants and agencies, especially if the client is transferred between hospital and long-term care, or is in an ALC bed.
- Especially miscommunication, but also lack of communication of facts, reality, a client's situation, timelines, and predictable patterns of the dying process.
- Assuming that the patient or their family, understands what is happening.
- Patients visiting attending physicians alone, e.g., hearing, comprehension issues. (One tool: questions family members should ask. See: Questions to ask your physician)
- For clients with behavioural issues the physical environment, the space, is the most important influence.
- Family involvement: either too little, or too much.
- Sibling rivalry, or misperceptions.
- Differential treatment of residents/clients in retirement homes vs. long-term care. (See: Beds in LTC vs. retirement homes)
- Incorrect placement of clients in ALC beds, LTC, retirement homes.
- Inappropriate placement of the palliative client, whether they be at home, or in hospital or in LTC.
- Discharging a patient to uneducated family members, failing spouses. (Hospitalization for seniors, what family members should know.)
- Lack of trained staff, especially in Central/northern parts of the provinces and territories. That age-old issue of rural vs. urban resources, despite Skype, video and teleconferencing.
- Misperception, e.g., that resuscitation is a treatment, and/or part of the treatment plan.
- LTC care staff, Hospitals, or Emergency Departments, ignoring patient-written DNR orders, or the adult children who ignore them.
- Adult children who ignore DNR orders.
- Education and support of staff and family members.
- Lack of training, or understanding of the state of a client in palliative care.
- Unstated diagnosis of palliative situation.
- The presumption by professionals, often the physician, that death = failure.
- Lack of a standard education, a registry and regulation of Personal Support Workers, especially at for-profits long-term care (LTC) settings. (Personal Support Workers & LTC)
- Using a research-based assessment tool to help predict and prepare the client and family, to assess the best placement for a client.
- National Norms of Practice unevenly applied: rural/urban, from province to province.
- Accreditation does not necessarily guarantee that a resident will receive appropriate palliative care in a long-term care setting.