Palliative care for blood disorders

The palliative care phase

When it comes to malignant blood disorders, clearly defining the palliative care phase may be difficult, since the progression of the illness is characterised by rapid changes, and even if the situation seems challenging, it may still be possible to affect the progression of the illness with haematologic treatment options.

For these reasons, the actual palliative care phase in malignant blood disorders may end up being rather short. In some cases, the progression of the illness, side effects from treatments, or the treatment no longer working may change the situation so rapidly that the patient moves directly to hospice care. There may be little time left to plan for the end-of-life stage and prepare for the approaching death.

Early palliative care

As is common in the case of many types of cancer, even patients with malignant blood disorders, as well as their loved ones, may benefit from early palliative care integrated into treatment of the illness itself.

Early palliative support helps identify and bring up the patient’s wishes and things that the patient considers valuable in situations such as deciding on treatment alternatives when curing the illness is not an option.

Symptom management

It’s important to let your attending physician and other members of your care team know about any symptoms interfering with your life, because symptoms can be managed effectively. Palliative care and treatment of the blood disorder do not rule out each other – on the contrary. Palliative care, aimed at symptom management, is provided alongside haematologic treatments, and continues after haematologic treatments are stopped, in other words when moving to palliative care intent.

Those with malignant blood disorders receive treatments targeting the illness, such as chemotherapy, for long periods of time. Side effects of chemotherapy include nausea, damage to the mucous membranes, and pain.

Abnormal bone marrow function

Both treatments targeting the illness and the progression of the illness itself lead to abnormal bone marrow function, resulting in fewer red blood cells, platelets, and white blood cells in the bloodstream. This may lead to fatigue, shortness of breath, bleeding easily, and catching infections.

In the case of blood disorders, most symptoms at the end of life are caused by severe abnormalities in bone marrow function that affect the entire body. Changes in the patient’s condition can be due to abnormalities in any cell line:

• decreased function of the circulatory system and reduced oxygen transport due to fewer red blood cells

• bleeding due to fewer platelets

• a serious infection due to fewer white blood cells.

Depending on the progression of each individual case, and on the cause of the symptoms, changes in the patient’s condition may be rapid or sudden.

Use of blood products in palliative care for patients with blood disorders

Blood products play an essential role in the treatment of blood disorders. If necessary, blood products are also used in palliative care to provide symptom relief..

In palliative care, the purpose of blood products is to relieve symptoms and increase functional capacity. That’s why plans concerning the use of blood products are based on subjective benefits in terms of symptom relief, not just on blood test results.

If the patient’s functional capacity allows for everyday activities, red blood cell transfusions may be used to support and maintain functional capacity. Platelet (thrombocyte) transfusions are usually used to treat significant bleeding. The patient’s treatment team makes a plan for the use of blood products in cooperation with a haematologist, based on the individual needs of the patient in question and considering factors such as possible upcoming procedures.

When the patient is receiving hospice care, the use of blood products is no longer beneficial.

Symptoms caused by bone metastases in myeloma

Since bone metastases are very common in myeloma and tend to cause pain, especially when moving, pain relief is given a great deal of attention. The aim is to maintain functional capacity so that the patient can cope with daily tasks without being limited by pain.

Both pain medicines and radiation therapy are effective in treating bone pain. Bone metastases can also cause fractures, and metastases in the spine can press on the spinal cord. In such cases, acute medical treatment is required.

Shortness of breath

Infections, anaemia, and decreased general condition can all cause shortness of breath, which can be relieved with medication or with methods determined by the cause – for example, by removing excess fluid from around the lungs.

Bowel function problems and nausea

During cytopenia (when blood cell counts are at their lowest, especially in terms of white blood cells), or during an infection, diarrhoea and nausea may occur. These symptoms can be relieved effectively with medications.

Fatigue and loss of appetite

Both having an advanced illness and complications from the illness, such as infections, cause fatigue and a gradual loss of appetite. In the end stages of the illness, when the care is palliative in nature, enhanced nutrition therapy does not improve the patient’s condition; at this stage, it’s more important to have small, frequent portions of energy-dense foods according to the patient’s preferences.

Ways to try and reduce fatigue include getting fresh air and appropriate physical activity. It’s also important to adhere to a regular sleep-wake cycle. Additionally, corticosteroid medicines can be used to relieve fatigue and improve appetite temporarily. At the end of life, the patient’s strength decreases, fatigue intensifies, and the need for sleep and rest increases.

Psychological strain

Having an illness puts strain on the mind too. Living with a long-term illness includes both good and bad moments. It’s good to talk to the care team about how you’re coping mentally. Depression and anxiety can be managed both by talking and with medication. Peer support may also be helpful.

While treatment for your blood disorder is still ongoing, it’s advisable to contact the unit responsible for your care if your general condition worsens, you develop symptoms that interfere with your life, or your symptoms get worse.

If the use of blood products is deemed beneficial for the patient, plans for how to carry out possible transfusions are made in advance. It’s possible to give red blood cell transfusions at home with the help of care providers such as home hospital services, whereas platelet infusions are given in healthcare units.

Units specialised in cancer treatment and haematology have expertise in palliative care, including symptom relief and pain management. All cancer units in university hospitals, and many central hospitals, have palliative care units or persons in charge of palliative care, as well as pain clinics that can help with symptom management. Psychosocial support and talk support is also available. It’s a good idea to get acquainted with the local palliative unit while still undergoing active cancer treatment, so that plans for sufficient support and help can be made early on.

At the very latest, when it’s time to end active treatment for the blood disorder, every patient should be assigned a palliative care provider in charge of their care. No one should be left to cope with their illness alone.

At the end of life, the care provider in charge of the patient’s care is usually in primary care and located close to the patient’s home. This can be a palliative outpatient clinic, health centre, home hospital, home care or nursing service, or a hospice or hospice care ward. The important thing is to have a plan ready for where to get help at any time of the day or week.

At the end of life, going to the emergency department is a taxing experience. That’s why it’s preferably avoided by cooperating with the care team ahead of time to prepare a plan for what to do if the patient’s condition gets worse or if their symptoms change. Unless it’s an acute medical emergency, it’s advisable to contact the unit responsible for the patient’s care before visiting the emergency department. If the patient has pre-existing access to home hospital services, a nurse or doctor can visit the patient at home and assess the situation, if necessary, or make arrangements for transfer to inpatient care (support ward) without the need to visit the emergency department.