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.  This situation is felt most acutely in the last year of life, for those dealing with disability, debilitation and palliation.  We know from reports that approximately one third of all health care spending occurs in the last year of a person’s life.  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.  Without downplaying the importance of diagnosis and treatment, people often experience enormous difficulty in managing all the different pieces.  Patient navigation through complex health care systems is extremely important.  Even in the advent of Electronic Health Records, communication is commonly lacking between different providers and agencies.  The end result is that patients and their families suffer needlessly.

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.  Although I’ve known the issues related to patient navigation from my 26 years in healthcare, I’ve 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.  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.  We’ve asked for help from four physicians including the family doctor, two specialists and one doctor in the ER, without success.

I’ve 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.  He hasn’t been given a definitive diagnosis yet and so doesn’t ‘technically’ qualify, but my colleague opened a file and took him on in care.  Suddenly, everything changed.  He has prescriptions which have already helped with appetite, energy and sleep.  He’s less anxious.  The case file has opened the door for other supportive care including an assessment of his needs from occupational and physio therapists. He’ll receive home nursing care if, and when, he requires it.  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.

I’m so incredibly grateful for this service and particularly impressed that the entire team stems from nursing leadership.  It’s just disappointing that I had to pull strings to make this happen.  What of people who don’t have these options?  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.  One outcome for me is that I will be even more cognizant of the ‘big picture’ when caring for patients and an even stronger advocate for better patient navigation and management, particularly when they are at their most vulnerable.

Roberta Heale, Associate Editor