Color & Control:

Things to consider when remaining at home to die

Many Canadians say they would like to die at home, probably because home feels comfortable and familiar. Yet, most of us aren’t aware of what supporting a death at home might involve. The purpose of this article is to outline some of the potential challenges and rewards that come with a home death. That way, both patients and caregivers can have a better idea of what might be expected.

Is there a “best” place to die?
Deciding where to provide care can be a difficult decision and you may find that you change your mind as circumstances change. There really is no one “right” answer. What is ultimately most important is that the person feels comfortable and you have the support that you need. If you try to stay flexible in your planning, you might be able to avoid feelings of guilt or regret if things change in the future. People often hesitate to make a change in location when they feel it means breaking a promise, either to themselves or to a family member. Instead of promising a home death, you might decide:

• to stay at home for as long as possible;
• to regularly review how caregiving is going with the health care team.

One of the reasons people choose a home death is because they can have family nearby in familiar, comfortable surroundings. With the support of local health care services (such as a palliative care program with home care resources), this may be a rewarding and meaningful experience for the family. But, near the end of life, families may feel overwhelmed with caregiving responsibilities and find that they are spending very little time talking, sharing or sitting quietly with the person who is dying. If you find yourself in this situation, you may want to re-create the home environment in a health care setting.

You can sometimes create surroundings that reflect the way the person has lived – even in a hospital room. Photographs, music or other important family items can help to personalize what may otherwise be an institutional space. For some families, removing the responsibilities for primary caregiving can free up time and mental space for family members just to be together. For them, maintaining the spirit of being “home” is more important than actually being at home. For others, there is a sense of purpose and accomplishment that comes with caring for a family member at home.

Things to think about
If you are considering a home death for you or a member of your family, there are some basic elements that will help make that possible:

• The patient and the family support the idea of a home death.
• More than one family caregiver is available.
• Skilled medical support is available at any hour of the day.

After these basics, there are some practical considerations:

• Does the family have the resources to support a home death? For example, is there wheelchair access into the home? Is there a bedroom on the main floor? Can caregivers afford to take time off work, or are they eligible for caregiver benefits?
• Is the patient able to perform some tasks, such as transferring to a toilet or holding a spoon for eating, or does the caregiver need to help with all tasks?
• If the patient is having physical symptoms, like pain or trouble breathing, has the caregiver been provided the needed resources and information to make the patient comfortable?
• Is there enough room in the home for medical equipment that would help in providing care?
• Is the family comfortable with providers coming into the home to help?

Open lines of communication
Ongoing communication is essential in caring for a family member at home. A shared understanding of each family member’s roles and responsibilities will help to avoid feelings of resentment or anger. If possible, talk about how you are feeling throughout this experience, as you will likely experience many different emotions. Seeking the support of people you feel comfortable confiding in may help to reduce feelings of isolation and may also lead to offers of help.

Open, honest communication with the health care team is also helpful. You may have to let your health care team know if you are ready to have more detailed information.

Community supports
It is important to have the support of health care providers who are easy to reach, responsive and able to help you develop a home caregiving plan. The team can help you understand what resources you need now and what resources you may need in the future, and connect you to other support networks.

Planning ahead
People with terminal illness will generally experience changes in their physical abilities as illness progresses. Over time, they may develop new or progressing symptoms. Preparing for these changes in advance with your health care team can help you to feel more comfortable when these changes occur.

Prepare for common symptoms and changes
Talk to your health care team about what to do if your family member experiences symptoms such as pain, shortness of breath, confusion, restlessness or increased chest secretions. All of these symptoms can usually be managed at home, even if the person is unable to swallow medications.

Sometimes the health care team can anticipate when new challenges might arise and a new medication might be required. In that case, you may be provided with a prescription so that you are ready for the change. Other medication issues to consider to avoid the need for hospitalization include:

• Does the patient still need existing medications? Medications that are not needed to provide comfort may be discontinued.
• Might any existing medications be harmful as the patient’s condition declines? For example, medication to lower blood sugar may cause new risks if the patient is no longer able to take in food.
• Is there a plan in place to manage symptoms when pills or tablets become hard for the patient to swallow? Medication may then be administered under the tongue, with skin patches, by injections under the skin, or through other means.

Prepare for emergencies
Talk with your health care team about who you should call if you need urgent help at home during the day or on evenings and weekends. Possible options include your family health care provider, a palliative care tele-health network, your home care nursing office, or 911. Keep information about emergency contacts in a spot that is easy to find, such as on the fridge door.

Prepare for caregiving breaks
As a family caregiver, you may be required to help with bathing, toileting, lifting, and turning a person in bed. The physical work of providing care can be exhausting, particularly if you are living with your own health concerns. Plan to have friends and other family members ready to help or to give you a break when you need it. Scheduling regular breaks in advance can help to ensure that you have time to replenish your energy.

Prepare for physical changes
Over time, people living with terminal illness become weaker and less able to physically care for themselves. Using equipment such as walkers, bath seats, shower rails or commodes can help the person maintain a sense of independence even as they become weaker. It may be helpful to look around your home from the perspective of someone with a physical disability: “Can we get a walker or wheelchair through the bedroom door? Will that
rug be a tripping hazard?”

These are some physical changes that are often significant for patients and families include: needing help with toileting, losing the ability to move around the home, losing interest in food/water, and loss of consciousness.

Some of the people on your support team may include:

• Nurses or doctors working with local or regional palliative care programs. Even if in-home visits are not offered through the program in your area, program staff may still be available to offer telephone advice. These programs are often run through hospitals;
• Family doctors or nurse practitioners who are willing to make home visits;
• Home care nurses who can help you to manage symptoms at home by visiting regularly, assessing your health care concerns, and coordinating care with other members of your health care team;
• Health care aides with home care programs who may help with bathing, light meal preparation and cleaning;
• Respite staff offering short-term patient care for several hours or even several days;
• Hospice volunteers who can visit, provide support, and help you to feel less isolated at home.

Home care programs may also provide access to equipment such as wheelchairs, walkers, bath seats, shower rails, and hospital beds to help family caregivers provide safe care.

Remember that you are an important part of your health care team. Sharing your observations, questions and concerns with your care providers helps them identify the appropriate resources.

The promise to stay at home
If you have promised a family member that you will help them die at home, you may feel anguish at the thought of breaking that promise if things become too challenging or exhausting. If possible, try to remember what you were trying to achieve through the promise. What was the spirit or intent of the commitment? It may be possible to achieve the spirit of the commitment away from home.

Families often experience mixed emotions about a death at home, especially when:

• The person is unconscious and no longer able to respond to family members;
• They realize that they may not be comfortable living in the home after a death.

Mixed emotions when the patient is unconscious
Sometimes family members find that much of their energy and inspiration for caring for someone at home comes from the meaningful two-way connection that exists at such an important time. They may feel drained of this energy when loss of consciousness means the loss of two-way feedback. Families may find that they are ready to stop being the primary caregivers at this point.

In other cases, family members find that the work of grief begins or they may feel overwhelmed and feel ready to move the person into a care facility.

Sometimes families in these situations continue to provide caregiving at home even though they would prefer to move the person into a hospital or another facility. Very often, they stay because they have promised a home death. If you’re in this situation, ask yourself this question: Whose needs are being met by staying at home? If you are unable to see how anyone’s needs are being met, then it may be time to move the person into another care setting, knowing that the spirit of the promise has already been fulfilled. 

Perhaps one of the most important considerations when thinking about a death at home is ensuring that you have the support you need to provide quality care. Whatever decision you make remember that there are always other options available.  

Source: Canadian Virtual Hospice.

Just the facts: 

• In Canada there is approximately 1 death every 2 minutes. 
• 99% of palliative care at home was provided by family or friends.
• 62% had palliative care in hospital only.
• 43.3% of assisted deaths occur at home.
• 88 number of residential hospices in Canada.


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