Maintaining Quality of Life at the End of Life

Making end of life decisions is difficult for many individuals. In a long-term care setting, end of life care should be addressed with a team approach, placing quality of life at the forefront. A dietitian’s role at the end of a patient’s life is a vital one. A dietitian can offer nutrition interventions to maximize quality of life, providing comfort and support.  

When Should You Bring It Up 

If a patient’s medical condition includes a chronic disease that is worsening or they have a terminal diagnosis such as end stage cancer, amyotrophic lateral sclerosis (ALS), liver cirrhosis, or advanced heart disease, it is important to discuss end of life wishes at your initial evaluation or at the first care plan meeting. The earlier everyone is on the same page, the sooner the healthcare team can begin helping the patient carry out their wishes. The patient’s quality of life is most important and should be honored as soon as their wishes are established.  

POLST and Advanced Directives 

In many cases, a Physician Orders for Life-Sustaining Treatment (POLST) document will be provided by the patient, or one will be completed at your facility. This form is a set of medical orders that address a limited number of critical health care decisions. This is a useful tool to review prior to your nutrition evaluation to familiarize yourself with the patient’s wishes. The form contains a section that addresses whether they are willing to use artificially administered nutrition and hydration in the event they can no longer eat. It will also address the use of IV fluids and dialysis.  

This information will give you an idea if decisions have already been made or if you will need to discuss specific nutrition interventions with the patient and family. If the POLST document is already completed, you may confirm or clarify the patient’s wishes with them. Be sensitive to the fact that they have already made their decisions and it may have been difficult to do so.  

Some patients may have an advanced directive form that appoints a health care proxy or power of attorney to make decisions on their behalf and/or provides instructions for making important health care decisions at the end of life. An advanced directive will often be accompanied by a living will. These ‘orders’ come from the patient, not the physician. 

How Dietitians Can Help Promote Quality of Life 

A patient may choose one of three directions when it comes to nutrition at the end of life. Comfort measures, aggressive measures including nutrition support, or sometimes a combination of the two may be desired. The dietitian should establish a nutrition plan of care that supports the patient and then communicate the plan with the other members of the healthcare team so that everyone is on board. For a patient who is leaning more towards comfort measures, consider these options that may be beneficial in promoting quality of life at the end. 

Liberalize Diet 

This goes for the therapeutic portion (carb controlled, heart healthy, etc.) as well as any texture modifications the patient may require. Always involve the speech therapist in your discussion when it comes to food and liquid consistencies. A doctor’s order may be needed to change a patient’s diet. Don’t be afraid to advocate for your patient’s wishes.  

Pleasure Foods 

Often when a patient is not able or no longer desires to eat three standard meals a day, pleasure foods will be ordered to allow for a ‘whatever you want, whenever you want it approach.’ This allows for bites and sips versus a full meal service. Pleasure foods may also be ordered in the case where a patient would otherwise be NPO, but an exception is made if the patient wishes to consume food despite possible complications. Pleasure foods should not be forced, but rather permitted if a patient requests food or drink. In many cases, an order will be written with instructions such as, “With nurse or speech therapist present.” 

Free Water Protocol  

The free water protocol allows a patient who is NPO or requires thickened liquids to have plain water or ice chips. There are specific guidelines for using the free water protocol including oral hygiene, timing of water between meals, and swallowing strategies for safety. 

Palliative Care and Hospice Services  

If a patient chooses either palliative care or hospice services, they are opting to place comfort and quality of life as the primary goals. These programs will often reduce medications that are no longer needed, including vitamins and minerals. In addition, weekly or monthly weights are typically halted, especially if it is uncomfortable to move them or not medically necessary to monitor any longer.  

Support Patient and Family  

Above all, be supportive of the patient and their loved ones. Advocate for their quality of life and communicate with the healthcare team and family often. Although you may cease documentation in their chart, do not forget about them. Use the time you may have used to write a lengthy note to follow up with them on a personal level. Often, stopping by a room to check in and say hello will make a patient’s day a little better. Dietitians do make a difference when it comes to improving a patient’s quality of life. 

Sarah Hammaker, RDN

Sarah Hammaker, RDN is a clinical dietitian working primarily in long-term care and acute rehabilitation hospital settings in Pennsylvania. Outside of work, Sarah enjoys spending time with her husband and their four children. She loves running and being outdoors. Her hobbies include reading, planting and shopping.

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