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Palliative Care and the Person on HEN or HPN
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Beth Popp, MD FACP, HMDC, FAAHPM

          As someone who receives nutrition therapy—either enteral nutrition (HEN, tube feeding) or parenteral nutrition (HPN, IV nutrition)—at home, someone who cares about someone receiving nutrition therapy at home, or a professional involved with providing these treatments to patients, you may wonder, why have an article about palliative care for HEN/HPN patients? To understand this, let’s start by making sure everyone understands what palliative care is.

         Palliative care is specialized care, provided by a multidisciplinary team, to provide an extra level of support for patients with serious medical conditions. Palliative care can be provided by the same health care team that treats the serious medical condition, or it may be provided by specialist teams of physicians, nurses, and social workers.

Living Well with a Chronic Condition

          Palliative care teams do a number of things that can help improve a patient’s quality of life:

  • The palliative care team works with the patient’s primary health care team and other specialists to manage symptoms that may be related to the serious medical condition and its treatment. The symptoms can include pain, nausea, constipation, anxiety, depression, difficulty sleeping, and more.
  • Palliative care specialists work with patients and families to make sure their concerns and values about what is most important to them are understood and considered in decisions about their care as they find ways to live the best lives possible despite the presence of a serious medical condition. They can help patients articulate their goals and values so these are part of the discussion when there are key decision-points about care, which may need to change at a particular point in the patient’s illness. This aspect of palliative care comes up when a current treatment isn’t working, and patients need to decide between a higher risk treatment which may be more effective, or a lower risk treatment which may not be as effective.
  • Palliative care teams can help patients with serious medical conditions make plans for future needs, so they can be prepared for ways in which their needs may change as their illness affects them over time.
  • Palliative care teams also help patients address the psychological and social issues they might find challenging due to their illness or treatments.

               Reading that description, you can see that much of what you turn to the Oley Foundation, or your nutrition support team for, is palliative care, provided by the same health care team treating the serious medical condition. It is simply that no one ever labeled that aspect of your care as “palliative care.” Reading that description, you can also see that much of what is done in these four areas would be helpful at various times to patients receiving HEN and HPN.

Improving Outcomes

               There are many reasons why you may not have thought about palliative care teams working with HPN and HEN consumers. Palliative care teams are often associated with seriously ill patients in the hospital, in intensive care units, or who might have been affected by chronic progressive illnesses and are not able to live in the community, but rather in facilities. This can include people with conditions like Alzheimer’s dementia, in which HEN is not recommended.

               As stated above, palliative care teams bring expert care in four areas: managing symptoms; providing psychosocial support; facilitating communication of patient’s goals and values; and planning for future care needs. These same areas of expertise are important in caring for patients who are close to the ends of their lives, and many palliative care specialists use these skills to care for highly symptomatic or distressed patients at the end of life.

               More and more, however, health care professionals are recognizing that including palliative care teams in patient care earlier in the course of serious illness can improve the outcome for the patient and the family. More and more, palliative care teams are available in outpatient settings, perhaps like the nutrition therapy clinic you attend for checking in with your clinical nutrition support team. There are also home-based palliative care teams that see patients in their homes when the patients’ medical conditions make it difficult for them to come to an office or clinic.

Good for Any Age, Any Stage

               Palliative care is appropriate at any stage of illness and for patients of any age. The degree to which patients may need palliative care can vary throughout the course of their illness. Many patients will have more symptoms when a condition is first diagnosed. Those symptoms caused the patient to see their health care provider and get diagnosed in the first place.

               Patients and families may also have a high level of distress when first diagnosed, or when they are first told they need HEN or HPN. They worry about what their new medical condition and/or HEN/HPN will mean for their life. Will they be able to continue to go to school or work? Will it affect their future dreams and hopes? What will their medical treatments or life on HEN/HPN be like? Will they begin to feel better? When? Will they ever be able to stop HEN or HPN? How will they adapt to the changes caused by their medical condition and its treatment, including HEN/HPN?

               While some people on HPN/HPN may eat and drink to a limited degree, others may not eat or drink by mouth at all. Those who can no longer eat can experience grief and find social gatherings (which often may be centered on food) challenging. They may wonder how they will adapt.

               As the patient’s treatments take effect and they adjust to their “new normal,” they may have less need for the services of the palliative care team. Many patients have ups and downs in the course of their illness over many years, with periods of being stable in between. During these ups and downs, the services and expertise of the palliative care team may be much more important than during the stable periods, when the palliative care team may be less needed. The relationship the patient and family develop with the palliative care team over the many ups and downs provides the patient with additional health care professionals who they know and trust and who can help provide a perspective that can be important when decisions need to be made during a complication or crisis.

Brianne

               Let me share a story of a patient to illustrate some ways in which palliative care can help a patient with HPN or HEN.

               Brianne was a sixty-year-old woman who had had head and neck cancer when she was forty-five. After her diagnosis, she quit smoking. She was treated with surgery, radiation, and chemotherapy. Her cancer treatment was very successful, leaving her cancer-free. It also left her saliva-free, with a chronically dry mouth, difficulty with eating and swallowing dry foods, and a chronically hoarse voice. She was petite and thin and cared about her weight. At first, she worried about gaining weight from stopping smoking, then she worried about losing weight as it began to be difficult to swallow about fourteen years after her treatment.

               The swallowing problem was a long-term side effect of the radiation treatments she had received to cure the cancer. She had several bouts of aspiration pneumonia, lung infections that result from ineffective swallowing. Each was more serious than the last. She had spent years worrying that the cancer would come back, but now she worried that she would have such a bad pneumonia she would have to be intubated and be on a ventilator. She wanted to avoid these things as much as possible.

               Brianne also liked being independent and having her active life, which included going out to eat three to four times a week with her husband and often another couple or two. She had worked in the fashion industry, and dressing well and looking “put together” was important to her.

               Having a palliative care consultation helped Brianne articulate these priorities and goals about what mattered most to her. She was able to see that the feeding tube would help her maintain a healthy weight and minimize the chances of a severe episode of aspiration pneumonia. But how would it affect her voice if she stopped drinking water all the time to keep her mouth moist? And how would having a feeding tube affect her ability to dress smartly and maintain the social life, based around dining out in restaurants with friends?

               The support of the palliative care team social worker helped her process these concerns and come to a decision to have a PEG (percutaneous endoscopic gastrostomy) tube placed. The palliative care team worked with the enteral nutrition home care team to make sure Brianne’s concerns were addressed and reinforced in the education plan made for her and her husband. They also made sure her primary doctor and the lung specialist who was called in for her episodes of pneumonia knew that she was very clear about what treatments for pneumonia were acceptable for her if she had another episode despite the feeding tube being placed, and what treatments she was not willing to have under any circumstances. These treatment preferences and limits were spelled out in an advance directive, along with information about the goals and values that were the foundation for those decisions.

               Brianne adjusted to the feeding tube, including learning how to enjoy social outings to restaurants without eating. She learned how to dress in ways that allowed to her take feedings conveniently and which styles of clothes didn’t reveal her tube underneath them. The palliative care specialist didn’t see Brianne for several months.

               Six months after the tube was placed, Brianne developed shingles in the area that included her PEG insertion site. The palliative care specialist got involved again to help with pain from the shingles. The specialist was also able to help get the dressings modified until the shingles healed and the skin didn’t have any open areas remaining.

               A few months later Brianne noticed more and more problems with her voice. It was often so hoarse people couldn’t hear her on the phone. She contacted the palliative care team as this difficulty with communication was making her feel very isolated. The palliative care team members couldn’t resolve this problem for her, but they contacted an ear, nose and throat (ENT) specialist, emphasizing the issue was Brianne’s voice quality not her swallowing problem.

               Brianne’s story illustrates some ways in which a palliative care team can help someone receiving HEN at various times, and how the relationship can ebb and flow, depending on the patient’s needs.

Additional Resources and Obtaining Palliative Care

               If you want to learn more about palliative care, you can find information on palliativedoctors.org, the patient site of the American Academy of Hospice and Palliative Medicine (AAHPM); and getpalliativecare.org, the patient site provided by the Center to Advance Palliative Care (CAPC). These sites include information designed to help you discuss palliative care with your health care providers if you feel you may benefit from the addition of palliative care to your care or the care of someone you know and support.


LifelineLetter, January/February 2019

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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