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End-of-Life Planning for Patients With End-Stage Renal Disease

February 21, 2016

End-stage Renal Disease

Beans, beans, they’re good for the heart! The more you eat the more you… Well, you probably know the end of that poem! Kids (and maybe adults, too?) love that playground rhyme because of its puerile reference to flatulence. However, put a plate full of beans in front of a child and you’re may face an upturned nose – whether or not they’re good for the heart! Among the beans Americans are most familiar with are kidney beans, the base ingredient for beloved chili recipes and weekend cook-offs. Kidney beans are so-named because of their striking likeness to the human organ. Kidneys look very much like ovals crimped in the middle, roundly bulging out a little bit on either end.

While human kidneys would be a poor ingredient for a good chili (gross!), they are instead an excellent filter organ used to clean the blood in your body. Which is why when the kidneys fail, it’s terrible for the heart – and the blood, and the rest of your body. So, what happens when your beans are no longer good for the heart? What happens when your kidneys fail? How will your loved ones and care team manage your symptoms? What kind of planning do you need to prepare for the kinds of medical and end of life decisions that you might face?

Physical Symptoms for Patients Suffering from Kidney Failure

Renal patients suffering either from both chronic or acute kidney failure experience similar symptoms that require specific management from medical, hospice, and palliative care providers. When kidneys fail it is because the organs are unable to remove bodily waste and other fluids from the body. When toxins are no longer filtered out, they build up in the blood causing a number of uncomfortable and even painful physical symptoms. You may be nauseated or even vomit, have headaches, feel exhausted and feverish, and experience loss of appetite, all similar to symptoms of coming down with a virus.

Standout symptoms include muscle cramps, itchiness, difficulty regulating blood pressure (resulting in ability to concentrate, dizziness, and tingling in the limbs), and changes in skin color. It may also be difficult to produce urine because the fluid is being retained, often resulting in swelling around the eyes and ankles.

Main Symptom Management Tools

Symptoms are most accessibly managed using dialysis, either in the form of hemodialysis or peritoneal dialysis. Dialysis is sampling cleaning your blood of the waste that builds up, making you sick. When you dialyze the waste you’re your body, you will naturally feel much better. Hemodialysis is often done in the hospital or at a local treatment center (although sometimes at home), and it is a procedure by which a patient’s blood is slowly removed from the body, filtered clean from toxic waste, and then reintroduced to the body once clean.

Alternatively, peritoneal dialysis can be done outside of treatment facilities and involves the surgical insertion of a catheter tube into your abdominal cavity. After the surgical site has healed, you will introduce a sterile cleansing solution into your abdomen, allow it to remain there, cleaning the waste in your blood, and then drain the waste. Kidney transplant may also be an option to consider with your nephrologist and medical care providers.

Symptom Management with Diet

During a course of dialysis treatment, you will need to make some adjustments in your diet. Certain foods may worsen symptoms of kidney failure, while other foods may enhance your feelings of wellness and increase quality of life. Foods that may be restricted include those containing high levels of phosphorus and potassium (frequently found in certain whole grains, fruits, and vegetables). Beans, beans – they may be good for your heart, but they often contain way too much phosphorus for kidney patient comfort!

You’ll also want to restrict intake of processed foods due to high concentrations of sodium, fat, and cholesterol. Your care team likely has a nutritional coach or dietician who can help you organize a livable, enjoyable diet that matches your kidney care needs.

Advance Care Planning

The most significant challenge you and your caregivers may face when your kidneys fail includes identifying the most important aspects of your last years, months, or weeks. End of life planning is critical when facing renal disease and failure. When planning for your end of life as you face a complex and difficult medical situation, understand that it is advance plans are not a capitulation to death.

Instead, advance care planning allows you and your loved ones the prospect of identifying ways to help you achieve life goals now and for when the end comes (whenever the end might be).

What To Do With Your Things

The first vital step of end of life planning is creating both a living will and medical power of attorney. In other words, how will your resources and possessions be managed at the time that you are incapacitated or have died? Consider how your decisions and preferences might affect your loved ones and how they might participate positively in your preferences. What kinds of medical decisions would you like to make? If you are unable to make decisions yourself, who would you trust and prefer to make decisions on your behalf?

Don’t gamble with your resource or medical questions. Complete the planning and paperwork in conversation with your loved ones to ensure the best possible care and outcomes. A hospice and palliative care team may be able to help you locate legal paperwork and counsel in preparing official documents. You will rest easier – which means increased strength and focus on important things! – knowing the nuts and bolts of the future are in order.

What To Do With Your Time

The second vital step of end of life planning is establishing your major goals. Is your primary goal to see the birth of your grandson at the beginning of next year? Is there an adventure coming up with friends that you’ve been excited about for years? Is there one final book you want to write or activity you’d like to complete? If so, those involved with your care need to be aware. Many medical procedures aimed toward your care may limit your ability to fulfill anticipated goals, and it may be possible to plan medical care around your hopes for the future.

Furthermore, if you have reached the place of accepting a terminal situation with your renal disease, advanced strategic planning in regard to your comfort care may increase the likelihood than you can be present for the goals you identify as ultimately important, rather than finding yourself in an cycle of treatments that could leave you in a nursing facility or unnecessarily incapacitated. Identify your hopes for your end of life in consultation with loved ones and invite your medical and hospice care team into that conversation.

What To Do With Your Memories

The third vital step of end of life planning may be difficult, yet of utmost importance: planning for what will happen after you die. Identify what you would like to happen with your remains – burial, organic burial, cremation, etc. Furthermore, carefully consider some aspects of how would you might like to be remembered. While it may feel unusual to talk through your preferences for a funeral or memorial service, the details matter, perhaps especially to your loved ones. Discuss readings and music you would like to appear during a memorial.

Would you like a funeral and/or burial to occur in a specific location? Identify to your loved ones what you would prefer and why. Are there people you would like to ask to help lead your memorial service, either as a religious official or simply to say words of reflection? Put your preferences on paper. Not only is it important to reflect on the life you’ve shared with others, but it is a gift and treasure to loved ones to plan in this way. They will want to remember and honor your; give them the best tools to do that well in the midst of their grief.

Contact Harbor Light Hospice for Support

For more information about symptom management and best practices in advance care planning for renal patients, or to learn about the benefits of hospice care for kidney failure/renal failure please contact Harbor Light Hospice onlineor call on of our locations today.

Filed Under: Harbor Light Hospice Blog Tagged With: End-stage Renal Disease

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