Living and Dying Away from Home
Many people have well-thought out plans to die at home, but what if symptoms become unmanageable and there is an unexpected hospital admission? As Canadians with universal health care, there are options to a home death. The article Is Dying at Home Overrated? may help you and your person decide where is the best place to die.
This section gives information on:
1. Long-term Care (LTC)
If your loved one lives in a long-term care (LTC) home, there is a very good chance that they will be able to live out their final days and weeks in that familiar environment. According to the Long-term Care Service Eligibility Policy, there are some exceptions to this, depending on whether the care needs can be safely met in that facility. When they can no longer be, the resident may be transferred to hospital.
Some LTC homes can provide a cot in your loved one’s room or there may be a separate room for family members who wish to spend the last hours and days with a dying loved one. A kitchenette may be available to prepare food and sometimes food is available for purchase. A chapel may be open to those seeking solace.
If the person has lived at that facility for some time, the staff may be a great asset as they may well have developed a genuine caring for them. The presence and voices of familiar staff may bring comfort to you both. Some LTC staff feel a responsibility to walk the end-of-life journey with their residents, which is truly a testament to their calling. They will do everything they can to keep their charges safe and comfortable but also recognize when the care of others is needed.
Although it may seem harsh, if your loved one is not expected to return to the LTC facility, you may be asked to remove personal items from their room to make it ready for the next resident. We understand that this is a very difficult task at a highly emotional time, but it may help to think of the family who is in need of the LTC room.
2. When is it time to go to hospital?
When a person’s needs cannot be safely met in their current location, a move to hospital may be necessary. An acute change in pain or symptom management that can be best met in a facility may be the catalyst. Regardless of the reason, the transfer will typically be made by ambulance.
As we state in the What is Palliative Care? section of our website, there is currently no standardized palliative program that covers all of Nova Scotia. Whether your hospital has a palliative care unit or if palliation takes place in beds throughout the facility, a palliative approach to care on some level should be achievable.
Will others give care with the same heart and dedication as you? Try as they might, they probably will not. You have more knowledge of your person’s wishes and preferences. You know their body rhythms and what changes in behaviour will indicate pain, fear, or sadness.
The personal care you gave was likely on demand, or pretty close to it. Personal care performed by others will not necessarily be different than the personal care given by you at home. It is no longer on your schedule. Healthcare providers have a number of patients who depend on them, so patience will be needed in waiting for your turn. It’s a big change for you and your person who is used to having your undivided attention. As most healthcare providers in hospitals are very busy, any help you could give with your loved one’s personal care may be welcomed.
As your loved one grows weaker and end-of-life comes into focus, you may want to spend all of your time with them. However, time spent in a hospital as a visitor can be very long. The Caregiver Hospital Survival Kit can make time with your person more peaceful and comfortable.
Although you are probably not exerting the same amount of physical energy, you may find that you are exhausted at the end of the day as the emotional work can be just as exhausting. It is important that you, the caregiver, get rest. Some hospitals simply do not have the room or resources for overnight family stays. As difficult as it may be to step away, catching a few hours of sleep in your own bed at home may be really beneficial to you.
Some hospitals, however, do have cots or chairs that convert into sleeping surfaces so you can stay the night with your loved one. Expect interrupted sleep, however, as the noises of a hospital are unfamiliar and when staff members check on their patients, it may wake you fully. Perhaps another family member can take the overnight shift, allowing you a deeper sleep.
You may find comfort in having skilled and experienced people close by when you have questions or if a symptom is changing rapidly. Speak with the staff when they are available and ask questions. If you are bothered by not knowing how long your person will remain alive, keep in mind that it is difficult for anyone to answer that question with any accuracy. A healthcare provider may be able to share the wisdom they have collected over their career but they do not have a crystal ball and cannot foretell the future. Perhaps a better question is, “In a situation similar to this, what might be expected as the condition progresses?”
3. Hospice Residence
The only functioning hospice in Nova Scotia currently is Hospice Halifax, although others are under construction. Hospice Halifax is a 10-bed facility in HRM that accepts patients from all across Nova Scotia. It is expected that they will be able to meet the needs of 150 patients per year.
The Hospice website states: “Hospice Halifax is a place like home for patients who require end-of-life care. It’s an option for patients with end-of-life care needs that can’t be met at home and who don’t require admission to an acute care facility.” It also includes information on eligibility requirements and how to apply, as well as an invitation to contact them for more details.
Here is a list of all Hospice Societies in Nova Scotia.
4. Dying while Travelling
If there is any likelihood that your loved one may die while you are travelling abroad, it would be wise to contact Canadian Border Services prior to your trip. The CBS website offers direction on what steps to take if the death is in a foreign country. It is suggested that you contact a Canadian Consular Officer who can help with finding a reputable funeral home to handle arrangements. A listing of Consulate Offices is also linked from that website as are instructions for repatriating your person’s remains back to Canada. A 2-page fact sheet can easily be printed and taken along with other important documentation.
The Nova Scotia Board of Registration of Embalmers and Funeral Directors also offers help in identifying a local funeral home that will not take advantage of your vulnerable state. They can “... act as your agent, monitoring and avoiding any possibility of excessive, unnecessary or double-billing possibilities.”
One of the difficulties faced by many caregivers is in knowing how much strength or momentum must be kept in reserve for the final mile. When the race you are running has no visible end, how do you know when to parcel out scarce energy? Is this a sprint or is it a marathon?
If the person dies in a long-term care facility or hospital, you may take comfort in knowing that you are surrounded by people who know what to do. Caregivers have reported that they appreciate someone else taking over the care at end-of-life so they can focus on being the spouse, child, sibling, or friend of the person who is dying.
Some hospitals, hospices, and LTC homes now offer a dignity quilt as an option to the body bag when a person has died. Many people consider it a gentler and more respectful last viewing of your person’s body as it is taken to the mortuary or funeral home. Some facilities even encourage an ’Honour Guard’ of those who cared for or resided close to your loved one. With a bit of notice, those wishing to pay their last respects will line the halls of the facility as the person leaves for the final time. It can be a very moving and healing experience for your family and others in the hospital or LTC home
How I Made Friends with Reality – Emily Levine (15 minute TedTalk video)
With her signature wit and wisdom, Emily Levine meets her ultimate challenge as a comedian/philosopher: she makes dying funny. In this personal talk (10 months before her own death), she takes us on her journey to make friends with reality -- and peace with death. Life is an enormous gift, Levine says: "You enrich it as best you can, and then you give it back."