Choosing Hospice and Palliative Care at home, or in a Hospice
Determining the appropriate hospice care you or a loved one requires at end-of-life may seem like a daunting task to take on during an already difficult time.
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.
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.
Is the family comfortable with health care providers coming into the home to help with caregiving? Home care workers, palliative care nurses or doctors may be some of the people who visit the home.
When a patient and his or her family have adequate support at home the experience of a home death can be very positive for everyone.
For many seriously ill patients, hospice offers a more dignified and comfortable alternative to spending your final weeks or months in the impersonal environment of a hospital.
Seeking hospice and palliative care isn’t about giving up hope or hastening death, but rather a way to get the most appropriate care in the last phase of life.
To decide if hospice and palliative care is right for you or a loved one, learn about your options for quality end-of-life care.
Although death is a natural part of life, the thought of dying understandably still frightens many people. You may imagine pain and loneliness, spending your final days in the cold, sterile environment of a hospital far from family, friends and all that you know and love. However, hospice care represents a compassionate approach to end-of-life care, enhancing the quality of remaining life and enabling you to live as fully and as comfortably as possible.
Hospice is traditionally an option for people whose life expectancy is three months or less, and involves pain and symptom relief rather than ongoing curative measures, enabling you to live your last days to the fullest, with purpose, dignity, grace, and support.
In most cases hospice is provided in the patient’s own home. This enables you to spend your final days in a familiar, comfortable environment, surrounded by your loved ones who can focus more fully on you with the support of community staff and the Palliative and Supportive Care team (the Team).
The Team work in partnership with you and your family and caregivers to meet your physical, emotional, social and spiritual care needs. While you are in our care, your personal, cultural and faith values will be respected at all times, as well as your beliefs and practices.
The care provided in a residential hospice in BC is not fully covered by the public health system. The family will be required to pay a daily charge which is the lowest residential rate and is not subject to financial assessment. Sometimes private or group insurance will cover these costs.
A residential hospice provides full-time palliative care, generally in a home-like setting. Some hospices will also take care of the person who is ill for a few days at a time so that caregivers can get some rest. Unfortunately, there aren’t enough residential hospices to meet the needs of everyone who needs palliative care in Canada.
Many palliative programs offer volunteer support in the patient’s own home or residential facility, as well as Hospice. Palliative volunteers are carefully screened, selected and educated to offer emotional, spiritual and practical support to individuals and families living with advanced illness. Volunteers are often matched with families and are available to talk on the phone or make in-person visits.
If you live in residential care, the Team offers support services to help you remain at the residential care facility as your illness progresses.
If you are approaching end-of-life at a residential care facility, the palliative care team may meet with you and will work with the residential care staff to ensure that pain and other symptoms are well controlled.
Speak with residential care staff if you have questions related to hospice palliative care in your facility.
While most people would prefer to die in their own homes, the norm is still for terminally ill patients to die in hospital, receiving treatment that is either unwanted or ineffective. Their loved ones usually have only limited access and often miss sharing their last moments of life.
Some families who do choose hospice care often do so only for the last few days of life, and later regret not having more time saying goodbye to their loved one. To ensure that your family understands your wishes, it’s important for anyone with a life-limiting illness to learn all they can about hospice and palliative care and discuss their feelings with loved ones before a medical crisis strikes. When your loved ones are clear about your preferences for treatment, they’re free to devote their energy to care and compassion.