Many people are interested in dying at home, but don’t know what steps to take in order for this to happen successfully and peacefully. Palliative home care is a program offered by Alberta Health Services, for individuals who have been diagnosed with a progressive, life-threatening illness (prognosis 6 months or less) and require the skills/involvement of the interdisciplinary palliative home team. It is a service that will take care of your medical, psychological, and social needs as your approach end-of-life and provide support to your loved ones. Palliative home care makes it possible for you and your loved ones to share a peaceful, comfortable, and beautiful goodbye at home.
Once you are on the palliative home care program, you will have telephone access to on-call nurses 24 hours a day, 7 days a week. They are available to offer support and problem-solving related to your palliative care concerns. Personal care assistants, RNs, LPNs, Social Workers, physiotherapists, registered respiratory therapists, and occupational therapists will work with the individual and their family to provide support. The program permits individuals to receive 35 hours per week of in-home support/care, which can be increased to 72 hours per week when end of life is imminent. If more than 72 hours in the final days are required, individuals may have to hire private home care services (though some flexibility may be granted at the discretion of your palliative home care team). On this program, the individual and their loved ones are given a special number to call in the case of emergencies (not 911) – as palliative care concerns are best dealt with by palliative team experts.
How can I receive this service?
Individuals can self-refer to the palliative home care program by calling 403-943-1920. However, it is recommended that you first seek to be referred by your physician, or through your acute care “transition services” team. Referral through either of these latter routes will ensure that the necessary medical information is conveyed quickly and accurately – expediting the process. Physicians and nurses can refer you to the program, using the same phone number (403-943-1920).
What if I begin receiving palliative home care and decide that I’d rather be in a hospice?
Sometimes people decide that dying at home is not what they thought it would be. The experience can be overwhelming for family members, but also very rewarding. It’s all about personal preference, expectations, and comfort levels. Moving to hospice is certainly an option if you feel that in-home palliative services aren’t for you. There is no judgment from the home care team if you change your mind, as they want you to have the best possible palliative experience. Talk with your palliative home care team, and they will help you understand what to expect in hospice. If you decide that you’d like to move to a hospice, the team can assist your transition and show you the next steps.
What if, after spending some time in hospice, I decide that it’s not for me and I’d rather be at home? Can I re-enter the palliative home care program?
Though this situation is rare, it does happen on occasion. An individual moves into hospice after receiving palliative home care, and then realizes “eek, this is not what I thought it would be.” Your transition services team will do what they can to tell you about the hospice experience as to avoid these types of situations, but it can occur. The transition from home à hospice à home again is a little bit tricky, but it is certainly not impossible. Take comfort in knowing that these decisions you make are not cast in bronze, and you have the freedom to change your mind if you so choose. Consult with your transition services team, and they will help you navigate the next steps.
What do I need to do or know in order for palliative home care to be successful?
1. Be aligned with the palliative philosophy of care. In other words, you are interested in receiving care focused primarily on comfort and quality of life.
2. Establish and maintain realistic expectations. For example, understand that in home care, physicians won’t necessarily be able to visit you once per week, but you will be visited by nurses at least once per week. The palliative home care team will help you understand the parameters of their service, so that you can decide if this is a program that will meet your needs.
3. Take advantage of online resources and support. Canadian Virtual Hospice (http://www.virtualhospice.ca/) and Pallium Canada (http://www.pallium.ca/) both contain a wealth of information for caregivers, family members, and individuals in end-of-life.
If we haven’t answered all of your questions, please write them below or e-mail us at firstname.lastname@example.org. We would be happy to let you know more about palliative home care services, and how they may help you through your journey. Our mission and pride is to keep Calgarians informed and in control of their medical experience. Let us know if there is a topic you’d like us to address in our blog!
Wishing you a happy and healthy day!