Over 80 per cent of Canadians say they would prefer to die at home, given the choice, yet only 5-10 per cent of Canadians have access to palliative home care. With palliative home care now increasingly in demand, and clinically more sophisticated, nurses providing this care in the home must have expertise in advanced oncology, pharmacology, technological and psychosocial interventions – combining the clinical expertise of the hospital in a personalized home setting.
Bayshore HealthCare, a Canadian home care agency, provides home nursing and personal support to over 4000 palliative clients every year, through its 26 Branches across Canada. The Bayshore Eastern Counties Branch, headquartered in Cornwall, Ontario, holds a specialty nursing contract for the provision of home palliative care in the five counties served by the Eastern Counties Community Care Access Centre (EC-CCAC). Bayshore Eastern Counties provides home care to over 300 supportive oncology clients per year and approximately 100-120 clients with irreversible and irreparable terminal illness. In the 5 counties, Bayshore’s Palliative Program is currently serving approximately 70-75 clients in the home where death is expected. The majority of the palliative clients have cancer; many others have terminal stage heart disease, respiratory or kidney disease or ALS. The majority of clients are 40-75 years of age.
The Bayshore Eastern Counties Branch employs a Palliative Care Consultant, Nancy Graham, RN, BScN with specialty oncology certification recognized by the Canadian Nurses Association. Nancy is a resource and mentor to the Bayshore field Nurses who provide the direct home care to palliative clients. She consults on issues such as control of escalating symptoms or pain and, if required, visits clients with the Primary Nurse to support them in their assessment. Nancy provides staff or client/family teaching and liaises with the client’s physician and other caregivers, with the aim of ensuring each client receives the most current expertise available.
Clinically complex care is now common in the home palliative situation. “Most things that can be done in the hospital can be done in the home,” says Nancy. Bayshore palliative nurses provide skilled nursing support to clients on complex pain and symptom treatments, infusion therapy, ventilators, clients with tracheostomies, central venous lines, nephrostomy tubes, and other updated technologies. Ongoing education is the key to quality home palliative nursing. Nancy attends specialty conferences on a regular basis and keeps abreast of the current literature. Primary Nurses and the Nursing Team participate in regular in-services and attend training events at the Ottawa Regional Cancer Centre.
Palliative clients are referred to the Bayshore Office by EC-CCAC. Each Bayshore client is assigned one primary nurse, and a nursing team. The primary nurse makes the initial assessment, provides the nursing care, works with client and family to develop their desired approach to the expected death, with the goal of comfort and dignity. The primary nurse is the link among members of the caregiving team: physician, case manager, volunteer hospice workers, social worker, personal support worker. The team coordinates visits and coverage with the family members’ schedules, so that the client gets the care and support required. Often clients have private insurance that can pay for hours of care needed over and above the CCAC-funded coverage.
Nancy says that the primary nurse is the essential glue that makes home palliative care work. The nurse informs the client and family what to expect at various stages of the illness and what their options are in terms of pain and symptom management, so that clients can make informed decisions. “Most clients are very clear about how they want the end stage of their life to be, and appreciate the sense of being in control; much of which is enabled by home care. Clients can decide for themselves when and what they want to eat, and how they will spend their time – seeing friends, having their pet by their side, having a party. Home palliative care is very individualized”, says Nancy. “The schedule and the interventions undertaken are all client directed. They are in charge of their process.”
The Bayshore Eastern Counties Branch Registered Nurses also have the training necessary to pronounce an expected death in the home, following a specific protocol that has been developed jointly with CCAC, medical, and nursing input. “The ability of the Primary Nurse to pronounce the expected death has made the end process much more peaceful,” says Nancy. “Previously, the family had to wait for a doctor, or coroner, sometimes police were involved; it could be very distressing.” Whether covered by CCAC or on a voluntary basis, a final bereavement nursing visit is done to support the family after the client’s passing.
Part of Nancy’s job is supporting the Bayshore staff emotionally as well. “As a palliative care nurse, you must take the approach that you are not there to fix everything. You are there to do your best to facilitate your client’s choices, to see that your client dies in comfort, in their own chosen manner and environment, that they have been assisted to deal with pain and symptoms with the best nursing care possible. It is a very special privilege.”