Chapter 6: Palliative Care for Cancer and Communicable Disease Patients

Introduction

Cancer is a common reason that people in the United Kingdom (UK) receive palliative care. Although comparatively uncommon, nurses working in palliative care settings may provide care to patients with a number of terminal communicable diseases - most commonly Human Immunodeficiency Virus (HIV), which progresses to Acquired Immunodeficiency Syndrome (AIDS). It is important that nurses working in palliative care settings are both competent and confident in caring for patients with a variety of different types of cancer and communicable diseases, particularly HIV/AIDS. This chapter provides a detailed overview of the symptoms and complications associated with cancer and HIV/AIDS, and their effective management in the palliative care setting. In completing this chapter, you will develop the knowledge and skills required to provide high-quality palliative care to patients with cancer and HIV/AIDS.

Important note

This chapter assumes a basic knowledge of human anatomy and physiology. If you feel you need to revise these concepts, you are encouraged to consult a quality nursing textbook.

Palliative care for cancer

In the UK, people may receive palliative care for a variety of different types of cancer; generally, however, this cancer is advanced and metastatic (i.e. the cancer has spread from a primary site to secondary site/s, often the liver, lungs brain and bones, etc.). The most common primary sites for cancer in people in the UK are:

1. Breast
2. Prostate
3. Lung
4. Bowel
5. Malignant melanoma
6. Lymphoma (non-Hodgkin)
7. Kidney
8. Brain, other central nervous system and intracranial
9. Bladder
10. Pancreas
11. Leukaemia
12. Uterus
13. Oesophagus
14. Oral
15. Ovary
16. Stomach
17. Myeloma
18. Liver
19. Thyroid
20. Cervix

(Cancer Research UK, NDb).

It is important to note that the first four of these cancers - breast, prostate, lung and bowel - accounted for more than half of all new cancer diagnoses in the UK in 2013 (Cancer Research UK, NDb).

Advanced and / or metastatic cancer has a significant negative effect on a person's quality of life, and is associated with a variety of complex complications. You will study these complications and their management in the palliative care setting in this chapter of the module. You should consider the information presented here in conjunction with the relevant policies and procedures of the organisation you work for.

It is important for nurses working in palliative care settings to realise that a cancer diagnosis, even one which involves a good prospect of recovery, is devastating and frightening for many people. Curative and life-prolonging treatments for cancer themselves (e.g. chemotherapy, radiotherapy, hormone therapy, biological therapy, etc.) often have a significant negative impact on a person's health, both immediately and in the medium- to long-term. People are often very concerned about end-of-life care for advanced and / or metastatic cancer, believing this to be a particularly unpleasant and painful condition from which to die; however, with effective palliative care this need not be the case. It is important that nurses work closely with patients with advanced and / or metastatic cancer - and their family, carers and significant others, as appropriate - to clarify their expectations and document their preferences for palliative care.

Management of cancer in the palliative care setting

In the UK, palliative care for advanced and / or metastatic cancer focuses on the provision of care to: (1) relieve the symptoms of cancer (e.g. pain, nausea / vomiting, dyspnoea, etc.), and (2) improve the patient's quality of life. Often, palliative care for advanced and / or metastatic cancer involves:

• Therapies to reduce or control the side-effects of cancer treatments.
• Therapies to reduce the size of cancerous tumours (e.g. chemotherapy, radiotherapy, hormone therapy, biological therapy, radio ablation, cryotherapy, etc.).

As you saw earlier in this section of the chapter, advanced and / or metastatic cancer is associated with a variety of complex complications. The remainder of this section of the unit will discuss these complications, and strategies which nurses working in palliative care settings can use to effectively manage them.

• Metastatic spinal cord compression: this occurs when metastatic cancer spread results in collapse of one or more of the spinal vertebrae, resulting in pressure, oedema, ischaemia and eventual infarction of the spinal cord. Less commonly, a cancerous tumour will itself directly compress the spinal cord. Patients with metastatic spinal cord compression experience a variety of neurological symptoms, including problems with mobility (ranging from functional movement problems to complete paraplegia) weakness, difficulty walking, changes in sensation and urinary retention / constipation, as well as cognitive deficits and pain. These symptoms may develop slowly over a number of days to weeks, however they may also occur rapidly (i.e. within 24-48 hours), and this is typically a predictor of a poor outcome.

Corticosteroids with a long half-life (e.g. dexamethasone), effective adjuvant analgesics for metastatic bone pain, are a key treatment for metastatic spinal cord compression. Depending on the nature of the spinal cord compression and the extent of the damage it has caused, management may also involve interventions to relieve pressure on the spinal cord - including surgery, radiotherapy and chemotherapy. Surgery in particular aims to reduce the instability of the vertebral column and so prevent the progression of spinal cord compression, and also to directly decompress the spinal cord. It is usual for allied health professionals such as physiotherapists and occupational therapists to be involved in the care of patients with metastatic spinal cord compression, to respond to their often rapid changes in functional ability.

• Bone metastases, pathological fracture and hypercalcaemia: bone metastases are common in many types of cancer; indeed, up to 70% of women receiving palliative care for breast cancer in the UK will develop bone metastases. Although there are usually multiple bone metastases, these may or may not cause symptoms. Where metastases are symptomatic, the focus of their management is usually the relief of pain, using non-steroidal anti-inflammatory drugs (NSAIDS), corticosteroids (e.g. dexamethasone) and opioids. Chemotherapy and radiotherapy may also be administered with the goal of reducing the symptoms associated with bone metastases. Bisphosphonates may be prescribed to reduce a patient's risk of metastasis-related fracture and hypercalcaemia. Newer techniques, such as cement injection and percutaneous ablation, are used to manage painful bone metastases which are unresponsive to conventional treatment such as analgesia.

Patients with bone metastases are at significant risk of pathological fracture, particularly of the weight-bearing bones. Where possible, a patient's risk of pathological fracture is identified using scoring tools (e.g. Mirel's Score) and x-ray images, and reduced through preventative interventions such as prophylactic fixation. If a fracture does occur, it is treated as a normal fracture would be; where bone repair is not possible or advisable - for example, in patients very close to the end-of-life - immobilisation and pain relief are used.

Patients with bone metastases - and also a number of other types of cancer, such as breast cancer and multiple myeloma - are also at significant risk of hypercalcaemia. This occurs when factors released from the immune system and / or the cancerous tumour interact with the parathyroid system; this has the effect of: (1) increasing the release of calcium from the bones, and (2) increasing the absorption of calcium from in the gastrointestinal and renal systems. Patients with hypercalcaemia present with a variety of symptoms including nausea and vomiting, osmotic diuresis (resulting in polyuria, dehydration, hypovolaemia, renal failure, etc.), and central nervous system dysfunction (e.g. constipation, confusion, etc.).

Treatment for hypercalcaemia focuses on intravenous rehydration, and the correction of key symptoms (e.g. nausea / vomiting, constipation, etc.) using relevant medications. Intravenous bisphosphonates are also used to control hypercalcaemia, though these typically have a slow onset, and changes in serum calcium levels may not be observed for up to 10 days after commencing treatment. Furthermore, even with bisphosphonate treatment hypercalcaemia often recurs, and as the patient's cancer progresses there may be shorter intervals between episodes and eventual bisphosphonate resistance. It is important to note that, for many patients with advanced metastatic cancer, hypercalcaemia is a terminal event - that is, one which leads to their death, and care focuses on symptomatic management.

• Brain metastases: up to 25% of patients receiving palliative care for cancer in the UK will experience brain metastases; they occur most commonly in patients with lung cancer, but also in patients with breast, renal and colorectal cancers and melanoma. Patients present with a variety of signs and symptoms - including cerebral oedema and raised intracranial pressure, headache, seizures, nausea / vomiting, and confusion / agitation / psychosis. Treatment focuses on managing the symptoms described, and the use of anti-cancer therapies (e.g. chemotherapy, radiotherapy, etc.) to reduce the size of the metastasis. However, it is important for nurses working in palliative care settings to realise that brain metastases in patients with advanced cancer typically carry a poor prognosis, because it is suggestive of widely-disseminated disease.
• Liver and lung metastases: as with brain metastases described above, liver and lung metastases are common in patients receiving palliative care for cancer in the UK; indeed, up to 25% of patients will experience a liver metastases, and 30% will experience a lung metastases. Again, treatment focuses on managing the symptoms of the metastases, and the use of anti-cancer therapies (e.g. chemotherapy, radiotherapy, etc.) to reduce the size of the metastasis.
• Superior vena cava obstruction: this occurs due to the obstruction of the flow of blood through the superior vena cava, often due to the presence of a cancerous mass and / or grossly enlarged lymph nodes. In a significant number of patients, superior vena cava obstruction is the first indicator of malignancy. Patients present with non-specific symptoms such as swelling of the face and arms (due to elevated venous pressure above the obstruction), dyspnoea, hypoxia and cyanosis, and heart palpitations or arrhythmias. Unless there is significantly impaired blood flow, superior vena cava obstruction is rarely life-threatening; therefore, management usually focuses on treating symptoms (e.g. dyspnoea, hypoxia, etc.). Chemotherapy and radiotherapy may also be used to reduce the size of cancerous masses, and surgical stenting may be performed to increase and maintain the diameter of the vena cava. Thrombolysis to prevent blood clotting may also be indicated.
• Obstructive nephropathy: this typically occurs when the ureters are obstructed by a cancerous mass, or by organs which have been displaced by a cancerous mass. If untreated, this leads to renal failure. Patients with obstructive nephropathy present with a variety of non-specific signs and symptoms, including oliguria, confusion, hypertension, nausea / vomiting, oedema and myoclonic jerking. Treatment focuses on relieving the obstruction - for example, by using anti-cancer therapies (e.g. chemotherapy, radiotherapy, etc.) to reduce the size of the tumour causing the obstruction, and surgical stenting may be performed to increase and maintain the diameter of the affected ureter/s. The management of renal function, including via intravenous rehydration, is an important consideration for nurses.
• Lymphoedema: this occurs when there is an accumulation of fluid within the interstitial tissues, often of the limbs, due to disruptions to the normal systems of lymphatic drainage. In patients with advanced and / or metastatic cancer, lymphoedema is usually progressive, chronic and incurable. Patients often present with oedematous extremities and pitting oedema. Management focuses on supportive measures - for example, analgesia, care of the skin to prevent breakdown, exercise (within the patient's tolerance) to promote lymphatic drainage, and compression (e.g. via the use of compression garments, using an intermittent pneumatic compression pump, etc.). Prevention of complications - such as cellulitis and lymphorrhoea - is a focus of lymphoedema management.

It is important for nurses working in palliative care settings to realise that advanced and / or metastatic cancer can produce a range of other significant complications - including haemorrhage, itch, fever and sweating. You will study the management of a variety of other symptoms seen commonly in the palliative care context, including those listed here, in detail in the following chapter of this module.

As described earlier in this section of the chapter, nurses working in the palliative care context must recognise that many palliative anti-cancer treatments - including chemotherapy and radiotherapy - can themselves have significant side-effects. These side-effects include:

• Gastrointestinal problems, such as oral mucositis, nausea / vomiting, diarrhoea and proctitis (often with rectal bleeding).
• Skin problems, including erythema and rashes, particularly with high-dose radiotherapy.
• Hair loss - which, although it is not life-threatening, can have psychological implications.
• Bone marrow suppression, resulting in complications such as thrombocytopaenia, neutropaenia and immunosuppression.

A variety of standard nursing cares are used to manage these symptoms.

Palliative care for communicable diseases

The most common communicable disease for which a person in the UK will receive palliative care is Human Immunodeficiency Virus (HIV), which progresses to Acquired Immunodeficiency Syndrome (AIDS). In comparison to many developing countries, HIV/AIDS is rare in the UK; indeed, in 2014 just 0.19% of the population aged over 15 years, or approximately 103,700 people, in the UK were living with HIV, and there were just over 600 AIDS-related deaths in the UK that year. However, more than half of adults diagnosed with HIV/AIDS in the UK have a late-stage infection - that is, with a CD4 lymphocyte count of <350 per mm³ within 3 months of diagnosis - and are therefore candidates for early phases of palliative care. Additionally, it is important to note that more than a quarter of HIV-infected people in the UK are undiagnosed, and so unaware of their infection.

HIV/AIDS is a viral disease spread via contact with body fluid. In the UK, it is typically spread: (1) via sexual contact - heterosexual and homosexual, and (2) via injecting drug use. Once diagnosed, a person's life expectancy and their disease progression are variable, and depend on factors such as their tolerance of antiretroviral (ARV) medication, their adherence to complex antiretroviral (ARV) medication regimen, and their development of resistance to ARV medications. For most people with HIV/AIDS in the UK, the infection can be considered a chronic, manageable disease - however, it is ultimately incurable and terminal, and for this reason conversations about palliative care and advance care planning should begin early in the progression of the disease.

Management of HIV/AIDS in the palliative care setting

People living with HIV/AIDS face a number of significant comorbidities, are at risk of opportunistic infection, and may also experience psychosocial issues (e.g. stigma). In the provision of palliative care to a person with HIV/AIDS, the multidisciplinary care team must address each of these complex issues. Consider the following case study example:

There are a number of key principles associated with the provision of palliative care to people diagnosed with HIV/AIDS:

• Access to palliative care must not be restricted due to political / social issues.
• Active treatment - including antiretroviral (ARV) medication - should not be withheld at any stage of the disease, except if the patient makes an informed decision to do so.
• Palliative care discussions should take place at every stage of disease progress.

Palliative care for people with HIV/AIDS is different to many other types of palliative care because it usually involves the administration of ARV medication right up to the person's death. ARV medication typically involves a combination of three or more drugs which are prescribed to reduce the viral load, manage symptoms, and maintain wellbeing (to the greatest extent possible) by supporting immune function. It is important for nurses working in palliative care settings to realise that ARV medication is occasionally referred to as 'antiretroviral therapy' (ART). Nurses are encouraged to familiarise themselves with the types of ARV medications commonly prescribed in the palliative care setting in which they work, their mechanism of action, and relevant safety precautions associated with their use.

As you will see throughout the remainder of this chapter, ARV medication can have very serious side effects. Its use can also result in a rare but significant problem known as Immune Reconstitution Inflammatory Syndrome (IRIS). This occasionally occurs in people with advanced immunosuppression and opportunistic infection (e.g. tuberculosis, cytomegalovirus, herpes zoster, pneumocystis pneumonia, etc.). In these patients, the commencement of ARV medication significantly improves immune function, and this results in an overwhelming physiologic inflammatory response that can cause a patient to become quite unwell. The management of IRIS involves treating a patient's symptoms and supporting the function of the immune system (e.g. through the administration of antibacterial and antiviral medications). Although it is unpleasant, patients should be encouraged to view the occurrence of IRIS positively, as it indicates that ARV medications are working effectively.

In addition to the administration of ARV medication, palliative care involves the use of a variety of strategies to manage the other common physical symptoms of advanced HIV/AIDS infection. These symptoms include:

• Pain: a significant number of people with HIV/AIDS experience pain. This pain may originate from the nervous system (e.g. neuropathy), the gastrointestinal system (e.g. odynophagia, abdominal pain, anorectal pain, etc.) and / or the musculoskeletal system. Research suggests that pain in HIV, particularly in the early to middle stages of disease progression, is underestimated and under-medicated; this results in poor outcomes for patients with HIV/AIDS, and is therefore an important consideration for nurses working in palliative care settings.

In patients with HIV/AIDS, pain management - wherever possible - focuses on the use of medications and other therapies to correct the cause of the pain. For example, people who experience painful neuropathies are often treated with nucleoside analogues to control viral activity, medications to control underlying painful conditions (e.g. diabetes mellitus, hypothyroidism, syphilis, etc.) and supplements to replace nutrients in which they may be deficient (e.g. Vitamin B₁₂). Similarly, patients with odynophagia (pain on swallowing) may receive antiviral medication to control infection (e.g. candida, cytomegalovirus, etc.) or anti-cancer therapies (e.g. chemotherapy, radiotherapy, etc.) to reduce the size of a malignant mass in their throat. Analgesia - often a complex combination of tricyclic agents, anticonvulsants and opioids - should also be used.

• Nausea and vomiting: this is another common symptom in patients with advanced HIV/AIDS. It is essential that the underlying cause/s of nausea and vomiting is identified, and that strategies are implemented to manage these cause/s. It is important for nurses working in palliative care settings to note that drug-induced nausea - particularly related to ARV medication - is common, particularly during the initiation of ARV therapy or when medication regimens are changed. This may require the alteration of the prescribed ARV therapy and / or the use of antiemetic medication to counteract the side-effects of this medication. Nausea and vomiting may also be caused by gastric stasis, in which case a prokinetic is often prescribed. It may also be due to neurological problems, such as raised intracranial pressure or vestibular problems, and appropriate medications are again prescribed.
• Diarrhoea: this is often due to the presence of opportunistic infections, such as cryptosporidium, in the gastrointestinal system. It may also be due to generalised inflammation of the bowel, pancreatic insufficiency, HIV/AIDS-related malignancy and / or intolerance to ARV medication. Again, wherever possible, these underlying causes of diarrhoea are addressed as a priority. Nursing care also focuses on preventing and / or managing complications such as dehydration and weight loss.
• Oral problems: mouth ulcers, oral candidiasis and gingivitis are a particular problem in patients with advanced HIV/AIDS infection. These can be very painful, and may impair a person's capacity to consume food and fluids. Topical steroids, anti-septic mouthwash and antiviral / antifungal medications can be useful in managing these problems. Nursing care also focuses on supporting a person to maintain an adequate intake of fluid and nutrition.
• Respiratory problems: pneumocystis pneumonia is one of the most common presentations in people with undiagnosed HIV/AIDS in the UK. Additionally, patients with HIV/AIDS are prone to mycobacterium tuberculosis, which may be multidrug-resistant and very difficult to effectively treat. In most cases, both pneumocystis pneumonia and tuberculosis are treated aggressively with intravenous antibacterial medications; however, some patients receiving palliative care for HIV/AIDS may opt to avoid aggressive intervention. Where antibacterial medications are commenced in patients with a CD4 lymphocyte count of <200 per mm³, they are often continued as a prophylactic (preventative) measure.
• Ophthalmologic problems: the eyes are a fragile body structure which are particularly at risk in immunocompromised patients. People with HIV/AIDS are prone to ophthalmologic problems such as retinitis and keratitis. These conditions are often due to underlying infection (e.g. cytomegalovirus, ophthalmic herpes zoster, etc.), and treatment focuses on addressing this infection.
• Dermatological problems: people with HIV/AIDS and relatively severe immunocompromisation are prone to dermatological problems, including yeast and fungal infections, psoriasis, viral infections (e.g. herpes simplex, herpes zoster, molluscusm contagiosum, etc.) and scabies. These conditions are treated using standard nursing care.
• Malignancies: people with HIV/AIDS and relatively severe immunocompromisation are at increased risk of developing some types of cancer, including Kaposi's sarcoma and non-Hodgkin's lymphoma. The way in which these cancers are treated - aggressively with anti-cancer therapies (e.g. chemotherapy, radiotherapy, etc.), or conservatively - depends on the stage of a person's disease progression and their preferences for care.
• Neurological conditions: HIV-related neurological impairment, commonly referred to as 'AIDS dementia', is a rare but serious complication of advanced infection. There is no treatment for this complication, and it often signals the terminal stage of a HIV/AIDS infection.

You studied privacy and confidentiality as a key legal and ethical issue related to the provision of palliative care in an earlier section of this unit; you should revise this section now, if required. Privacy and confidentiality are particularly important considerations in the provision of palliative care to a person with HIV/AIDS. This is because of the significant stigma attached to HIV/AIDS, resulting partly from the perception that HIV/AIDS is contracted through 'risky' sexual and injecting drug use practices, and resulting partly from the fact that HIV/AIDS is 'contagious'. It is important that a patient's requirements for privacy and confidentiality are determined during the palliative care planning phase.

Stigma in relation to HIV/AIDS - both in the general community, and in the health care system specifically - is an ongoing problem in the UK. Stigma may make a patient reluctant to seek testing or treatment for HIV/AIDS, and it may cause them to be incompliant with treatment regimen. Nurses must ensure they care for patients with HIV/AIDS in a non-judgemental way and non-discriminative way; this is important in providing high quality care at the end-of-life.

In delivering palliative care services to people with HIV/AIDS in the UK, nurses must also be aware of the complexities associated with access to National Health Service (NHS) funded services. A significant proportion of people living with HIV/AIDS in the UK were born abroad (e.g. in sub-Saharan Africa) and do not have UK citizenship - and therefore may be ineligible for NHS-funded health and palliative care services. Palliative care nurses must ensure they are familiar with the eligibility policies and procedures, and alternatives for non-eligible patients, relevant to the palliative care setting in which they work.

Conclusion

It is important that nurses working in palliative care settings are both competent and confident in caring for patients with a variety of different types of cancer and communicable diseases, particularly HIV/AIDS. This chapter has provided a detailed overview of the symptoms and complications associated with cancer and HIV/AIDS, and their effective management in the palliative care setting. In completing this chapter, you have developed the knowledge and skills required to provide high-quality palliative care to patients with cancer and HIV/AIDS.

Reference list

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