Despite primary health care reform in almost every country in the developed world, the most vulnerable often continue to face terrible difficulties in getting the care they need in a seamless and coordinated fashion.\u00a0 This situation is felt most acutely in the last year of life, for those dealing with disability, debilitation and palliation.\u00a0 We know from reports that approximately one third of all health care spending occurs in the last year of a person\u2019s life.\u00a0 I wonder what this percentage means for people who have been healthy until this final year and continue to live at home until close to the end of their lives. It seems probable that the majority of those health care funds are related to expensive diagnostic testing, hospital and physician costs and a much smaller percentage of those funds toward primary health care and community services.\u00a0 Without downplaying the importance of diagnosis and treatment, people often experience enormous difficulty in managing all the different pieces.\u00a0 Patient navigation through complex health care systems is extremely important.\u00a0 Even in the advent of Electronic Health Records, communication is commonly lacking between different providers and agencies.\u00a0 The end result is that patients and their families suffer needlessly.<\/p>\n
This situation is not new, however for the first time, I find myself not as a health care provider, but as the family member of a terminal cancer patient.\u00a0 Although I\u2019ve known the issues related to patient navigation from my 26 years in healthcare, I\u2019ve been astounded at the barriers to care that continue to rise up in front of us, particularly for symptom management. Each physician and diagnostic technician has taken a narrow, specific focus to the care.\u00a0 Not one would agree to assess and treat the weakness, lack of appetite and marked weight loss, lack of energy, anxiety and poor sleep of my family member.\u00a0 We\u2019ve asked for help from four physicians including the family doctor, two specialists and one doctor in the ER, without success.<\/p>\n
I\u2019ve worked as a nurse practitioner in my community for 15 years so I used some of my connections to have my family member assessed by the palliative care NP.\u00a0 He hasn\u2019t been given a definitive diagnosis yet and so doesn\u2019t \u2018technically\u2019 qualify, but my colleague opened a file and took him on in care.\u00a0 Suddenly, everything changed.\u00a0 He has prescriptions which have already helped with appetite, energy and sleep.\u00a0 He\u2019s less anxious.\u00a0 The case file has opened the door for other supportive care including an assessment of his needs from occupational and physio therapists. He\u2019ll receive home nursing care if, and when, he requires it.\u00a0 This team will keep all other providers informed of the care they are providing and will help my family as his condition continues to deteriorate.<\/p>\n
I\u2019m so incredibly grateful for this service and particularly impressed that the entire team stems from nursing leadership.\u00a0 It\u2019s just disappointing that I had to pull strings to make this happen. \u00a0What of people who don\u2019t have these options?\u00a0 The cost of this team is a very small percentage of the total health care costs, but the value to the patient and family is incalculable.\u00a0 One outcome for me is that I will be even more cognizant of the \u2018big picture\u2019 when caring for patients and an even stronger advocate for better patient navigation and management, particularly when they are at their most vulnerable.<\/p>\n
Roberta Heale, Associate Editor<\/p>\n","protected":false},"excerpt":{"rendered":"
Despite primary health care reform in almost every country in the developed world, the most vulnerable often continue to face terrible difficulties in getting the care they need in a seamless and coordinated fashion.\u00a0 This situation is felt most acutely in the last year of life, for those dealing with disability, debilitation and palliation.\u00a0 We […]<\/p>\n