Last week’s EBN Twitter chat “End of Life Care; One Chance to Get it Right” highlighted the important issue of the care of those who are dying. As nurses, we are all encouraged to individualize care and to ‘start the conversation’ with patients about their wishes, but where does this start? What does it entail? I think we would all agree that the best time to initiate discussions early…hopefully before palliation, hospitalization, or a catastrophic event that prevents a person from extending how they would like to die. In fact, I suggest that the conversation should start with people that the patient knows, and who know the patient well; in primary health care.
The discussion about advance care planning is a process of reflection and communication. Patients and families may reflect on their values and wishes, and let others know their future health and personal care preferences in the event that they become unable to consent or refuse treatment (CHPCA, 2014). Advance care planning is ongoing and may include the patient, his/her family and substitute decision-maker as well as healthcare providers. Advance care planning may be informal, or formal. It may include development of an end-of-life plan of care with appropriate legal documentation. Although there are parts of Advance Care Planning that nurses may not be comfortable or competent to enact, entering into a discussion with a patient about their wishes is a vital first step (Sudore & Fried, 2010).
Most people in the developed world die as a result of chronic diseases. These conditions are often diagnosed and monitored in primary healthcare settings well before end of life. Health care staff, including nurses and NPs working in primary health care, get to know their patients well. Because of this, they are in a unique position to initiate advance care planning discussions with them before they enter into the palliative stages. In fact, patients and their families are often waiting for health care providers to initiate Advance Care Planning discussions (Davison & Simpson, 2006; Jackson et al., 2012).
In clinic several months ago, I sent a patient for testing and he was diagnosed with a cancerous tumor. He has received treatment from the Cancer Treatment Centre in our city, but continues to come to the primary health care clinic for renewal of routine medications. He’s brought his wife to his recent appointments. I took the time at the last appointment to ask him if he had thought about end of life care…being sure to add that I wasn’t expecting this imminently! He and his wife relieved to discuss their plans and he told me that he was grateful that I brought it up since he now felt more comfortable approaching the clinic for assistance in making his death a good one, when the time came. With my assistance, the patient and his wife were connected to a social worker who helped them to complete legal documents, such as ‘power of attorney’ and a ‘living will’.
By initiating advance care planning discussion with patients, the nurse may help to increase the patient’s satisfaction and reduce stress, anxiety, and depression. Substitute decision makers also have reduced stress, particularly in knowing their loved one’s wishes (Detering, Hancock, Reade, & Silvester, 2010).
Nurses play an important role in the care of patients who are dying, at every stage. We shouldn’t be hesitant to ensure our patients have had the opportunity to express their wishes and to help them formalize them in preparation for the life journey ahead.
Canadian Hospice Palliative Care Association (2014). Speak Up. Advance Care Planning Retrieved from: http://advancecareplanning.ca/
Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal, 333, 886-889.
Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. British Medical Journal, 340(1345), 1-9.
Jackson, J., White, P., Fiorini, J., Shay, J. T., Derderian, L., Ayotte, J., & Osgood Hall, R. (2012). Family perspectives on end-of-life care. Journal of Hospice & Palliative Nursing, 14(4), 303-311.
Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256-262.