Home Hemo Impact on Patient Quality of Life, and How to Encourage it: a Patient's Perspective
Reprinted with permission from Jonathon Hope
Nowadays, whenever modernisers or visionaries talk about change, the phrases 'self-care' or 'care in the community' are never far from their lips. This is especially true for those who commission kidney care services—where dialysis unit dependency is the rule and for many patients' self-care and independence is a far-off dream. This article explains why this need not be so. By drawing on the experience of the author, it explains why for many dialysis patients a successful transition can be made to being an active, independent and self-managing patient—through home haemodialysis.
I would like to share with you my own experience, firstly, of the difference between unit and community dialysis, secondly, of the impact on my quality of life of switching, thirdly, of why so few patients take up this option, and lastly, of what physicians, staff and managers can do to change that!
The difference between a unit & community care: the dialysis experience
First, I would like to help you visualise the difference between 'unit' and 'home' dialysis—from this home dialysis patient's perspective!
Generally, dialysis of patients in a dialysis unit setting reinforces patients' passive involvement in their own healthcare. Staffs prepare the machines, take patients' BP and weight, administer lidocaine, and insert the dialysis needles. During treatment, the patient often sleeps restlessly for the 3-4 hours, sees a physician or specialist on-demand and finally gets home after a 6-8 hour round trip (including hospital transport). Despite admiration for the staff who keep him alive, he regularly feels drained and disillusioned after this thrice-weekly routine. Hospital dialysis discourages full-time work, and is very intensive in its usage of healthcare infrastructure, staff and patient time. Many such patients 'live to dialyse'.
In contrast, when you enter the house of a patient who dialyses at home you may feel you have come to the wrong house! Generally, they appear alert, healthy, and self-sufficient—and you may be surprised to spot a kidney machine tucked away. With the aid of a helper, the machine is often jointly set up, self-needling is the norm, and dialysis time itself feels productive, not wasted, as the comforts & distractions of home life are enjoyed. Generally dialysing longer, eating and drinking more, the patient has more energy, takes less medication, has a better quality of life, fewer admissions, & feels more in control than his hospital counterpart. Such patients dialyse to live.
Why are patients often reluctant to accept such treatment at home?
So why is it only 1 or 2% of kidney dialysis patients opt for 'care in the community'? The answer is complex BUT reversible: not enough is done to dispel the fears and preach the benefits of moving from the seeming comfort of a low risk unit setting. For every individual patient, these fears are real, rational and overpowering: some of my own fears prior to starting home dialysis 10 years ago included the following:
- Self-needling: Could I really learn the skill—and find the courage?
- The machine: Would I ever understand it? It seemed so daunting;
- I was sick, wasn't I? Could I manage my fluid, diet, anaemia etc. at home?
- What about my carer? I was single—could I find a committed carer?
- 'Hospitalisation' of my flat: Shouldn't I keep my treatment separate?
- I was no DIY expert: Could I manage all the changes needed to my flat?
- Machine problems? What would happen if things went wrong?
- Would it deter others? Wouldn't it turn off family, visitors or girlfriends?
To my genuine astonishment, I soon discovered after my rigorous training and the initial few trial runs, that virtually every single one of these fears proved groundless. In short, self-dialysis at home was safe; machine or health hiccups were incredibly rare (3-4 times in 10 years); support was comprehensive and inspirational, and delivery of my supplies was friendly and well managed.
The 'holy grail' of patient self-management: the 'active' patient
Despite rumours to the contrary 'active' patients are not born — they evolve! For many patients, there is a catalyst or specific event in their clinical history that triggers a desire for more information, different or better treatment options, and an alternative clinical outcome! In the current climate, all healthcare managers, physicians, nurses and staff have the power to play a pivotal role nurturing and creating active patients—and encouraging their migration to the community.
For many clinicians and patients, management of kidney failure gets tougher and tougher as time goes on, and patients rarely look forward to a full life span—even with a transplant.
But, for me, after 24 years of kidney failure, home dialysis still offers hope AND a quality of life to enjoy those remaining years. Partnering with a remarkable team of home dialysis professionals has been THE catalyst that has helped transform all aspects of my healthcare—especially dialysis and the management of my co-morbidities. After my conversion from a passive to an active patient a decade ago, I have never looked back. More recently, since doubling my hours on my machine at home, I have felt liberated and energised and have ate, drunk, worked, travelled and lived more than ever before—all in a local community setting!
How can we develop an 'active', self-caring patient partnership?
- Nurture NOT force: You cannot force patients to be more 'active'
- Expand Patient Education: Ease fears of new/community-based treatments
- Boost Peer-to-Peer support: Ask early adaptors to help 'spread the word'
- Promote 'informed' Choice: Patients must make own informed choices
- Align your interests: e.g., home dialysis: good for patient, good for staff
- Staff need support too: Staff need time and added resources to adopt working practices to genuinely partner with patients
- Co-morbidity support in a home setting is KEY: By focused outpatient support, help patients in search of co-morbidity & disease 'mastery'
- Create strong primary/secondary links: Informed primary care practitioners' support is a must
- Create a 24-7 Hotline: Even independent patients need back-up!
- Seek feedback: Keep 'on track' with surveys, focus groups, etc.
Most important of all, the lesson I urge you each to take away from my experience, is to believe that to nurture self-managing, active patients in the community, you do not need to re-start the Manhattan Project!
The healthcare system already contains in abundance the single most important "ingredient" for inspiring patient participation. For me, it was the remarkable home dialysis professionals themselves, who by offering me the hand of friendship and partnership from the very start, inspired me. They inspired the creation of a unique, equal, open and unprecedented 'active patient' partnership between patient and healthcare professional, that has transformed me—and my quality of life.