Terminal discharge: All you need to know

Sometimes even in spite of the best medical care, it can become clear that your loved one is nearing the end. The hospital is not the only place for your loved one to go; there are options to return home for a peaceful final moment, surrounded by loved ones. What does your loved one want? Is it feasible to do so at home?  Understanding what are the options available in such a situation and the various considerations would be important to make the decision on terminal discharge.  

What is a terminal discharge?

When someone is gravely ill in the hospital, and they are likely to pass on in a matter of days or hours, they may wish to return home to spend the rest of the time with their loved ones. This is when care priorities change and the patient’s comfort is prioritized. A terminal discharge, also known as a compassionate discharge, may be considered. This is when a critically ill patient is discharged home to spend the remaining time he or she has left with their loved ones. 

With a terminal discharge, the hospital staff will assess if the patient’s caregiver is able to manage care needs and the presenting symptoms at home. At times, additional equipment may be required to help with the care needs, such as oxygen concentrators or hospital beds. If care needs are too high for the patient’s caregiver to manage, private nursing services will be needed to assist the patient at home. If the hospital deems the patient suitable for terminal discharge, the patient’s caregiver will be briefed on signs and symptoms to look out for in a patient at the end of life, the various medications which are to be administered, and what to do when the patient passes away. After the briefing, the hospital will arrange for an ambulance to ferry the patient back home. 

The hospital may refer the patient to home hospice care. If the patient is already known to home hospice care, the hospital will update the hospice on the terminal discharge. 

Care options available for terminal discharge 

Hospices

Hospices focus on caring for people who are in the final stages of an incurable illness. They focus more on the patient’s quality of life, as patients admitted to hospices are typically terminally ill and do not have much time left. Someone is a suitable candidate for hospice care if they have: 

• Consented to forgo existing treatments if they are not effective 
• Recurring or frequent infections 
• Frequent hospitalisations or trips to the emergency room
• Inability to perform activities of daily living (ADLs) such as dressing, toileting, eating, walking, and personal cleaning 
• Uncontrolled and frequent pain, nausea, vomiting, or shortness of breath 
• Loss of appetite and significant bodily changes like weight loss
• Increased sleep or confusion 
• Desire to focus on quality of life, instead of curative treatment

Home hospice care teams

Home hospice care services see terminally ill patients and their families in their homes. A home hospice care team mainly comprises doctors, nurses, and social workers. During hospice care, the team members will visit the patient and tend to their care needs. This could range from administering medication to locating resources for use. The hospice team will work with the family to create a schedule of nursing visits and to provide help with ADLs. 

Looking after your loved one at home, with support from others

Another alternative besides engaging hospices or home hospice care would be to opt for looking after your loved one at home, with assistance from other caregivers like family, or private caregivers and nurses. With this option, though it may be more costly, you can have the flexibility of arranging for visiting schedules yourself and managing what you think would be the best for your loved one with minimal support. 

Factors to consider before your loved one’s terminal discharge

Your loved one’s wishes and needs

What does your loved one desire for his or her care? Does he or she want to be at home? Or maybe, would they prefer to be cared for by professionals in a hospice? If you know your loved one’s illness is likely to decline further, taking proactive steps to discuss care options is wise as this would help to give clarity in decision-making for his or her care in later stages. Even though these discussions are not easy, they are important in maximizing the quality of life for your loved one later on. 

Besides what your loved one’s wishes are, their needs are to be factored in as well. Supposing they are discharged, what would be the likelihood of them passing on en route back home? If your home is far from the hospital, it may increase the risk of such an incident happening. 

Your family’s ability to cope physically and emotionally with your loved one’s condition

Bringing a terminally ill loved one home to spend their last days or hours may sound like a given. However, the ability of your family to cope is crucial as well. If bringing home a terminally ill patient is something that causes grief, or if some family members have not quite come to terms with your loved one’s condition, it may not be beneficial to bring them home. Also, if you have children at home, would you be ready to explain death to them? It will be expected for caregivers and family members to be able to spot the signs and symptoms of their loved one passing on. Some may find this tremendously difficult to do, and hard to accept as well. 

Besides emotional considerations, physically, are family members able to provide care for your loved one? A terminally ill patient is likely to have very high care needs and will require intensive assistance and care around the clock. Are your family members willing to learn how to operate specialized equipment in a short period of time? Do they feel confident to care for your loved one as well? 

Qualified support to help with round-the-clock care

If a hospice or home hospice care team is involved, round-the-clock care is provided. If you bring your loved one home, have you established qualified support who can provide assistance 24 hours? Otherwise, if it is left up to the caregiver, do they have the necessary qualifications to care for your loved one? If you have decided to take on the role of caregiver and are planning ahead for your loved one’s care before they reach a terminal stage of their illness, there are courses available to caregivers to learn how to better care for your loved one. 

Resources and equipment needed

For a terminal discharge, it is likely you will need specialised equipment to help support your loved one’s final days at home. These could include hospital beds, commode IV drips, or oxygen supply if necessary. Hospitals are likely to be able to loan these equipment for the period your loved one is home. You will need to consider if there is space at home to house these items, as they can be bulky or elaborately set up.

Also, a terminal discharge often implies that the caregiver would have to be watching over the patient round the clock, as the final stages of an illness usually indicate the patient would have higher needs. Would you be able to handle the fatigue and grief of caring for your loved one at this juncture? Otherwise, is there any other support you can engage for 24/7 caregiving help? Nowadays, there are private caregivers you can hire overnight to care for your loved one, so it helps to alleviate some of the caregiving duties. 

What happens when your loved one is back home?

When your loved one is home, depending on the care options you have picked, the relevant healthcare teams will schedule appointments to visit your loved one at home and ensure medications and the necessary support is provided for your loved one and your family. Your family will provide care for your loved one, and if you have hired a private caregiver, they will step in to provide assistance. It is not just your loved one who has experienced changes in their lives though, you as a caregiver have also had a momentous change in your life. As a caregiver of your loved one, you may face the following issues: 

• Exhaustion from caring intensively for your loved one – these may manifest in feeling extreme sleepiness, becoming emotionally muted, and being unable to focus 
• Caregiver burnout
• Feeling conflicted about what to say or not to say in the final days or hours of your loved one’s life 
• Guilt from feeling tired out from caregiving needs, but yet knowing that it may be your last time with your loved one 
• Grief knowing that your loved one is likely to pass on soon 

Some tips and suggestions to deal with the issues would be to: 

• Hire external help so you can spend the remaining time relishing in the final moments together, rather than be winded with exhaustion from caring 
• Be open in your communication with your loved one, and speak your mind with him or her on what is troubling you or what you are not at peace with. Talk with them, even if they may seem like they are unable to hear you. This helps to give a sense of your presence and can be reassuring to both yourself and them. 
• Finding support from the people around you, such as emotional support from other family members, having friends help out with chores, and food, or communicating with others outside the family on the situation at home

Dealing with the impending death of a loved one is never easy, and often fraught with emotions and exhaustion. Knowing that you have other options, such as hiring a caregiver or a private nurse, to ease some of the load on you in that trying period, and to cherish the remaining time left together with your loved one, may be helpful.

Homage’s caregivers and nurses can assist with your loved one’s care after their discharge from the hospital. If you’d like to know more about how we can help, you may reach out to our Homage Care Advisory Team by filling in the form below.