As health care providers, our days are filled with patient care, meetings, charting, and juggling a myriad of tasks. Most patients are pleased with our care; others may be upset about their circumstances.
We genuinely care about our patients, but do we consistently focus on their personal desires or needs? Do we make time to ask what is important to them, and then honor their responses? Do we offer information about alternative care that may be available?
Sometimes, patients who are on long-term dialysis encounter dilemmas. Although they know dialysis is keeping them alive, some feel like their lives have little quality. Here are some comments I have heard from long-term dialysis patients who are questioning their present quality of life.
“I wish someone would sit down and listen to my feelings, but everyone is too busy.”
“I’m tired of being tied to a machine. It’s unbearable to sit in a chair for four hours, unable to get up and walk, or go to the bathroom if I have to move my bowels.”
“I hate fluid and food restrictions! I’m exhausted and sick most of the time, and I hurt all over.”
“I no longer want treatment, medical procedures, doctor visits, or hospitalizations.”
“Everything revolves around my dialysis schedule.”
“I might want to stop dialysis. I know I will die, but I just want to be at home with my family; no more poking, prodding, or needles. I could finally eat and drink whatever I want.”
“I’m ready to ‘go,’ but my family doesn’t agree or understand.”
Before we assume, we must ask, listen, empathize, and learn. Before we judge, we must try to understand. Allowing our patients to share their true feelings is a gift that we can offer.
Follow a path
There are some key things to consider if a patient starts asking about end-of-life options. We must determine if the patient is of sound mind. Are they simply venting, or are they seriously considering alternatives? Have they discussed their issues with the dialysis staff, doctor or their family? Could extensive counseling help them find more satisfaction in their life?
Once it appears the patient is interested in alternative modalities, information and education can be provided on palliative care and even hospice.
What happens if they lean toward a decision that we don’t agree with, or we don’t think is “best for them?” Is it still not their decision to make? It is not a simple choice or easy decision. They are seeking information.
The option for hospice
One option is hospice. Some important facts.
Hospice is covered by Medicare. There is no cost to the patient, if the patient chooses to stop dialysis. Medications, supplies, and any necessary equipment are provided by the hospice organization. In some cases, the patient can receive both dialysis and hospice, e.g., if the patient has serious conditions in addition to ESRD that meet criteria for hospice eligibility (COPD, heart disease, cancer, etc.)
Hospice focuses on successful pain and symptom management, not taking a life or speeding death. Hospice staff skillfully discusses disease progression, handling symptoms, and the patient’s decline and dying with gentle honesty, accuracy, and openness.
Hospice staff spend many hours with the patient and family, determining goals for pain management or troublesome symptoms, allay fears, provide personal cares, and active listening to develop a plan for the patient’s comfort at the end of life.
The multidisciplinary team includes foremost the patient and family, supported by certified nurse assistants, nurses, social workers, counselors, chaplains, and a medical director. Most care is provided in the patient’s home. Patient wishes are paramount and the entire team strives to address individual fears, worries, personal issues, the patient’s financial status, funeral concerns, etc. Teaching and listening are ongoing by all staff to ensure hospice care is provided in a manner that is acceptable to patient and family. Care is provided in a loving and supportive manner, extremely personal and intimate.
As a nurse, how do you feel?
Sometimes the dialysis professional struggles with internal chaos, and they may have mixed feelings about hospice. They may not know how to discuss it. They may be uncomfortable talking about death. They may worry the nephrologist, administration, or family will get upset.
It’s important to understand our patients’ emotional state, fears, and desires and align their care to meet their needs. Can we use active listening to hear their concerns, set our own emotions aside, and guide them with open ears and open hearts? We can. Together, we can ease them into the next phase of their lives.
- Coalition for Supportive Care of Kidney Patients http://kidneysupportivecare.org/Home.aspx
- Hospice Compare website www.medicare.gov/hospicecompare/
- Kilshaw L, Sammut H, Asher R, William P, Saxena R, Howse M. (2016). A study to describe the health trajectory of patients with advanced renal disease who choose not to receive dialysis. Clinical Kidney Journal, 1-6, doi: 10.1093/ckj/sfw005
- Eneanya ND, Paassche-Orlow MK, Volandes, A. (2017). Palliative and end-of-life care in nephrology: Moving from observations to interventions. Current Opinion in Nephrology and Hypertension, 26(4), 327-334. Retrieved from 26(4):327 334. www.medscape.com/viewarticle/881930_7
- Ladin K, Buttafaro K, Hahn E, Koch-Weser S, Weiner DE. (2017). End-of-life care? I’m not going to worry about that yet: Health literacy gaps and end-of-life planning among elderly dialysis patients. Gerontologist. doi: 10.1093/geront/gnw267.
- Lewis A. (2017). Capturing culturally safe nursing care (Doctoral dissertation).
- Ronaldson S, Hayes L, Aggar C, Green J, Carey M. (2017). Palliative care nurses’ spiritual caring interventions: a conceptual understanding. Int Jrnl of Pall Nurs, 23(4), 194-201.
- Schell, JO. (2017). Steps toward sustainable change in advance care planning. Am Jrnl of Kid Dis, 70(3): 307-308.