Becoming an oncology nurse was something I fell into. I had a rotation on the oncology floor during nursing school. I loved the patients and nurses, so I applied to that floor for my extended placement. What I didn’t recognize at the time was that my role as an oncology nurse included not only helping people heal and get better but also helping them die. Dignity, respect, and comfort are the goals of comfort care. This is for the nurses who need a little support and guidance when caring for patients at the end of life.
I began my nursing career in oncology, working inpatient at one of the largest teaching hospitals in the region. This meant I saw very sick patients with progressive illnesses, often at the end of their lives. The more senior nurses I worked with, my educators and managers, and an amazing palliative care team taught me how to properly care for someone who is actively dying.
The phenomenal multi-disciplinary palliative care team at this hospital consisted of social workers, nurse practitioners, physicians, and chaplains. This team was so involved, respected, and approachable that I was able to learn in a safe environment. I have not worked with a palliative care team this amazingly since, which leads me to believe that most nurses have not had this privilege. So, below are my biggest takeaways and starting points for those feeling somewhat lost.
Caring for end-of-life patients:
Advocate for your patient and find out what their wishes are. While some patients are admitted as end-of-life care (EOL), others transition to that status while they are in the hospital. While some treatment options might still be available, the true question is: what does your patient consider quality of life? With any progressive disease, the patient should be able to have a discussion as to what options are available, including treatment options and comfort options.
For some, that means exhausting every possible treatment option, including experimental drugs and trials. For others, that means spending their remaining time at home with loved ones. The problem is… we don’t know unless we ask. And the patient most likely doesn’t know unless asked either, as most people have been so focused on living they haven’t stopped to consider how they might want to die.
How do you accomplish this or begin to discuss these big questions? Below is a guide of possible ways to tackle this issue. While this is based on my experience in an in-patient setting, certain aspects can be applied to other settings. Your facility’s policies, your manager, and your charge nurse are also great starting points.
Introduce the discussion
Ensuring the patient has an advanced directive is something you should be able to easily organize as a nurse. Finding out who the patient would want as their decision-maker is crucial. It can be introduced like this: this is the document that declares who you would want to be your decision-maker if you could not make your own decisions. This could include being too groggy after a procedure, etc.
Along with the advanced directive, the Five Wishes advanced care planning program – which is recognized in almost all fifty states – allows a more detailed description of what someone would consider the quality of life. If you feel uncomfortable going over this form, ask your social worker, chaplain, or palliative care team for support or guidance.
Has the medical team discussed code status and transition to a higher level of care with the patient? Often, transitioning code status is a gateway to greater discussions about quality of life. However, a person does not need to be a DNR to have this outlined. Ideally, a patient should have had the quality of life discussion before it gets to this. As a nurse, you can introduce this topic, but you should discuss it with the primary medical team if they have had a more in-depth discussion about this.
Palliative Care team
If your hospital has a palliative care team, you could advocate for a consult. Any patient with a progressive disease and/or at least two chronic symptoms should be eligible for a consult with palliative care. Some hospitals are just developing palliative care teams and might not have the full multi-disciplinary team my hospital had, but look into this team as an excellent resource.
You can reach out to the patient’s social worker if a quality-of-life discussion has not been had or the patient has more in-depth questions. It is within the nurse’s scope to reach out to the patient’s social worker, who can then either introduce the topic to the patient themselves or discuss the need with the primary team.
Chaplain or Spiritual Care
Reaching out to the chaplain or spiritual care team at your hospital is a wonderful resource. A request can typically be placed directly by the nurse. Chaplains are very knowledgeable about how to navigate these difficult discussions and can help listen to what the patient’s wishes and desires are. Since some patients might be uncomfortable with the mention of “chaplain” or “spiritual care,” I try to introduce these services as non-religious if someone would like, and rather just a great source of information or someone to have a chat with. Many patients will enjoy the company.
If your patient transitions to EOL…
For end-of-life patients, everything should be focused on comfort. As the nurse, observe your patient and use assessment tools to determine if your patient is comfortable. Some patients will be able to supply subjective information to the nurse while using assessments like the numbers pain scale or inquiring about levels of anxiety or comfort. Other patients may be unable to supply this data, so nurses will need to rely on objective information garnered from other assessments like the Glasgow Coma Scale.
If family members are present, their familiarity with the patient’s expressions and demeanor can offer useful information as to how the patient might be feeling if unable to answer for themselves. Also, trust your gut – nurses are intuitive about what their patients might need. Here are some ideas that can make a huge difference in a patient’s comfort.
Using the common 0-10 Numerical Pain Scale if a patient can supply the information or using the Wong-Baker FACES pain scale if the patient can not is a good starting point. Is the patient grimacing or frowning? Is their forehead scrunched, or does their face look relaxed? It is then the nurse’s job to apply assessment findings to the orders provided. If the primary medical team has not changed the patient’s order set to reflect comfort care or you feel the pain control is inadequate, discuss your concerns with the primary medical team and advocate for appropriate changes.
If your hospital has a palliative care team, they should be asked to consult to help safely introduce and titrate higher doses of pain medication to provide adequate comfort. If there is not a palliative care team, request a consult with the pain management team, as this team will also know how to safely introduce the higher doses of pain medication required for end-of-life patients.
If you notice a patient seems to be fighting for a breath, this is referred to as air hunger. Again, it is the nurse’s assessment that will determine how to adequately manage these symptoms.
- What is the patient’s respiratory rate?
- Does the patient have retractions, nasal flaring, or excessive accessory muscle use?
The Respiratory Distress Observation Scale can serve as a guideline for a patient’s level of respiratory distress, but nurses should also use their clinical judgment. For air hunger, morphine is the drug of choice. Morphine and other narcotics can help with air hunger by altering the patient’s perception of being unable to catch their breath, allowing the patient to relax. The comfort care order set should include these medications and how to safely administer them. Supplemental oxygen can be used if it provides additional comfort to the patient.
The nurse can ensure the effectiveness of these interventions by maintaining a RR of at least less than 28-30 breaths per minute and seeing that the patient’s muscles and fidgeting are more relaxed.
Anxiety and restlessness.
If the patient’s air hunger is being controlled, but the patient still seems agitated and restless after assessment (observed by trying to get out of bed, fidgeting with fingers, grimacing on the face, appearing generally not restful), other medical interventions are available. These medications should be present on the comfort care order set as well and could include Ativan or Haldol. If you feel the patient is still agitated after initiating the available medications, relay your assessment findings to the covering team and ask what other options are available. This could include an increase in dose, a more frequent dose, or trying another medication.
Patients may have a buildup of secretions that could cause discomfort, which is observed through audible wet breathing sounds, drooling, or persistent cough. Medications such as robinol or atropine eye drops given by mouth can be effective. Providing gentle suction to the mouth is also helpful.
- Provide a gentle bed bath or a warm cloth to the face/forehead.
- Administer good mouth care with a suction toothbrush or sponge and suction; if the mouth is dry, provide sponges dipped in water to gently moisturize the mouth; provide lubrication for chapped lips.
- Play soft music or the patient’s favorite type of music.
- Seek a family member, chaplain, or volunteer to sit with the patient so they are not alone.
- Talk to your patients, let them know you are checking in on them, and help them feel safe.
- Don’t be afraid to regulate who comes in/out of your patient’s room and advocate if the patient needs rest, as hospital rooms can be high-traffic areas. If the patient wants uninterrupted time with their family, ask your charge nurse if you can put a sign on the door asking visitors to check in with the nurse before entering.
- Some patients might prefer a suppository to help them have a bowel movement; if a patient is incontinent or urine, an indwelling catheter might provide more comfort than frequent bed changes.
- Pay attention to any possible cultural wishes the patient might have.
- If the patient is awake and can communicate, try to honor their wishes. If they request a special meal, try calling down to the cafeteria and seeing if this is possible. If the patient has a wish to go outside, talk with your manager and the medical team to organize clearance for making this happen and seek support from other nurses or aids. If the patient wishes to see their young children, but the policy does not allow children on the floor, don’t be afraid to check with your manager to appropriately escalate the request and see if this policy can have a one-time exception.
- Reposition the patient using as many pillows as necessary. Some patients might prefer to just lay in one position, but a simple boost or fluff of the pillows can help provide more comfort.
Helping the families
While everyone copes in a different way, provide space for the family members to grieve. If they wish, keep them informed with updates; provide water, chairs, and other accessible comforts. Sometimes just listening is all someone needs. Let them know they need to care for themselves, too. Social workers and chaplains are a great resource to mediate conversations between families and their loved ones.
While this is not an exhaustive list, these are the things I have witnessed and the tools I have used to feel confident that I am providing the best and most comfortable care to my patient at the end of their life.
Nursing is a challenging job, and feeling as though you have the skills and knowledge to administer the best care is crucial to feeling confident when helping your patient. I hope this can serve as a tool to guide you along that journey.
- Advocate for your patient.
- Every member of the care team has the same goal: doing what is best for the patient. Approach every discussion with this in mind, and work as a team. Don’t be afraid to enquire about palliative care or pain management team consults, and have your charge nurse help you if needed.
- Use your resources
- Talk to other nurses, your charge nurse, the social worker, or the chaplain if you are unsure or need support.
- Remember that your patient is a person.
- Provide your patient with choice and dignity; speak to them as you always would. Even if your patient is not able to engage and is unable to communicate, introduce yourself, let them know what interventions are being done, and explain why.
- Use a combination of non-medical and medical interventions to achieve the most comfort.
- Trust yourself and your intuition.
You are an amazing person for doing this job, and you are appreciated. We hope this article on caring for end-of-life patients has been helpful. Do you care for end-of-life patients? Do you have any tips to share with your fellow travel nurses? Comment them below.
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