It can be tough to watch a loved one go through a terminal illness, particularly if the illness has progressed to such a degree that you can no longer care for them by yourself. It is in these times that we will often turn to experts for support and guidance on what to do next.

Hospice care is for those facing a life-limiting illness or health condition. It involves a holistic approach by managing pain and symptoms, empowering dignity, and upholding emotional and spiritual needs towards the end of somebody’s life. Depending on the person’s circumstances, there are varying levels of hospice care designed to meet the different levels of care required. Understanding the different types of care that are offered will support you and your loved one in making an informed decision. 

All hospice care utilizes a multi-professional approach to ensure that a patient’s needs and wishes are considered. This involves considering physical, emotional, social, and spiritual needs and typically looks like this: 

  • A physician oversees the patient’s care, including prescribing medication. 
  • Nursing care involves creating a care plan in collaboration with the patient and other disciplines, monitoring physical health, and ordering medical equipment. Nurses will also monitor pain and make adjustments to medication where appropriate. 
  • Occupational therapists will work with the patient to facilitate safety and comfort, for example, moving safely. They will also be able to recommend medical equipment that will promote the patient’s safety and comfort, for example, a hospital bed or walker. 
  • Personal care services support the patient in meeting their activities of daily living (ADLs), such as showering, dressing, and eating. 
  • Nutritional services for any dietary requirements or modifications, for example, swallowing difficulties. 
  • Spiritual support and counseling services, even if there is no spiritual or religious preference. 
  • A social worker can provide emotional support and end-of-life planning. They can also provide counseling for the caregiver/family and advise on any resources or services available. 

How this multi-professional approach is delivered will depend on the patient’s circumstances and what their family or friends can manage. There are four types of hospice care: 

1. Routine home care

Routine home care aims to promote comfort and quality of life as much as possible. Routine home care refers to care delivered wherever the patient is – a primary residence, assisted living, or a nursing home. This is typically the first stage of hospice care and may commence when a person receives a terminal diagnosis. 

When care is delivered in the home, a nurse will typically come to the home routinely and when needed during emergencies (24 hours a day). Other aide services may also attend the home to support the patient with, for example, personal care. The rest of the care team, such as occupational therapists and social workers, will be involved based on the patients’ needs. 

2. Continuous home care

If the patient is experiencing a crisis, they may use continuous home care. This short-term service aims to manage symptoms until they are better controlled. Caring for a loved one can be very demanding, physically and emotionally, and caregivers must look after themselves and seek support from others if required. This type of care will take place at home and can provide short-term respite for caregivers with the assurance that their loved one will receive 24/7 round-the-clock care by nursing staff. Continuous hospice care utilizes a multi-professional and holistic approach to ensure patients’ needs are met accordingly and with dignity. 

Continuous hospice care may be indicated if the patient is experiencing the following: 

  • Significant pain which is not well controlled with routinely prescribed medications. 
  • Uncontrolled or persistent bleeding or nausea/vomiting. 
  • Severe agitation, anxiety, delirium, or restlessness.
  • Respiratory distress that needs regular monitoring by a nurse. 

3. General inpatient care

Where it is not possible to manage symptoms that a patient may be experiencing through continuous home care, general inpatient care may be indicated or suggested by the care team. This type of care has similar goals to routine home care, aiming to get symptoms under control and returning home once this is achieved. The multi-professional team will work closely with the patient and their caregivers to meet their needs holistically. This may also include educating the caregivers about the patient’s condition, which can facilitate a successful return home. 

Caregivers, family, and friends can visit their loved ones throughout their stay. Typically, this care is provided in a hospital, nursing home, or hospice house where staff can provide round-the-clock care. These settings are usually much calmer than acute hospital settings where there are time pressures. This promotes care where all needs are considered. 

4. Inpatient respite care

Primary caregivers must take a break from the high demands of caring for a loved one in the final stages of life. It can be challenging for caregivers to accept help. Sometimes, they can feel reluctant to do this as they feel responsible for ensuring their loved one is cared for. However, taking a break ensures that the caregiver stays well, avoids caregiver burnout, and can sustain their role in providing care. A break can also benefit the patient as it promotes autonomy and reduces feelings of burdensomeness. 

The hospice team may recommend respite care if they recognize that primary caregivers display burnout symptoms. These breaks are usually, at most, five consecutive days. Respite care provides space for this break, providing short-term care by a nursing team according to the patient’s care plan. Respite care may also be utilized when the primary caregivers must attend an important event, such as a wedding, graduation, or funeral. 

Sum Up

To conclude, navigating the process of caring for a loved one who has received a terminal diagnosis can be complex and demanding. During this time, all needs must be considered holistically with the support of a multi-professional team. Various levels of hospice care can be explored to ensure that the correct care is in place for your loved one based on their needs and wishes.