Original Air Date: April 19, 1998

What is palliative care?

• Palliative care is providing holistic care to meet the needs and expectations of patients who have a progressive life-threatening illness (and their families).

Where does most palliative care take place?

• Its hard to tell. More and more is happening in the home, but almost every acute care hospital now has a palliative care person or team on staff.

Is it on the rise?

• It is gaining popularity and support because more attention is being paid to it by government and the health care system.
• Despite its increasing popularity, it is still minimally supported and minimally known. An Angus Reid poll a couple of years ago showed that only 30% of those queried could define palliative care.

What's the attraction?

• People want to die in familiar surroundings and, to some extent, on their own terms.
• According to StatsCan, 70% of people surveyed indicate theyd prefer to die at home.
• Additionally, hospitals are encouraging people to go home because there arent enough beds in their facilities.

What type of services are available as palliative care?

• Almost anything can be done in the home. Services that are available include
  • all home care services (nursing, homemaking, etc.);
  • pain pumps;
  • intravenous;
  • X-rays (depending on jurisdiction);
  • blood work (depending on jurisdiction);
  • special beds or equipment.
• While you can get just about anything at home, it still requires family input. You cannot get 24-hour-a-day care. (For example, in Ontario the limit is eight hours a day, seven days a week.)

What's the legal situation? Can anybody decide to leave hospital and die at home?

• In Canada, we have an absolute right to die at home.
• Too often, the option is not presented to people properly and their fears and reservations are not dealt with.

What are the biggest issues surrounding dying at home?

• Pain management.
• Weakness/loss of function.
• Inability to eat.
• Emotional issues: anxiety, fear, sadness, depression.

What must you consider when trying to decide whether to opt for home-based palliative care for a loved one?

• There must be a definite commitment to keeping the person at home.
• Make sure you have enough information about the medical condition and the options for care.
• Have a good assessment of the home situation.
• Is the family prepared and informed?
• What is the physical layout of the house in terms of stairs, toilet and bed facilities?
• Make sure there is a palliative care team in place to provide care in the home, including:
  0. a physician who is going to visit the home;
  1. nurses;
  2. homemakers;
  3. hospice volunteers, physio, etc., may be options, depending on the circumstances.

What's the hardest part for caregivers?

• The physical care. Often it can be overwhelming.
• Dealing with the caregivers own grief and loss as they watch their loved one die.

When is dying at home not appropriate?

• The physical care. Often it can be overwhelming.
• Dealing with the caregivers own grief and loss as they watch their loved one die.
  • If there's a huge amount of care required
  • When there are no family members to support the person.
  • When the family is dysfunctional.
  • When there are major complications of the illness.
  • When the patient and family are suffering from exhaustion.
  • When the patient and/or family just dont want the person at home.

What's the future of palliative care?

• The future of palliative care is brighter than it has been because more people within the health care system are becoming advocates.
• There will be continued growth and, of course, the requirement for funding.
• Proponents need become more vocal to show that it is cost-effective to provide palliative care in the home.

How does one become involved in the hospice visiting volunteer program?

• The future of palliative care is brighter than it has been because more people within the health care system are becoming advocates.
• You can undertake a Community Hospice's formal training program. The training includes:
  • learning the role of the volunteer;
  • communication skills;
  • basic background on medical conditions and diseases;
  • nutrition;
  • personal care tips (hygiene, etc.);
  • how to hold and move a person (i.e. bed to commode or toilet);
  • spiritual and bereavement care; and
  • basically being there "in any way, shape or form the client needs."

What types of things do you do as a palliative care volunteer?

• It can be anything-shopping, cooking, helping with medications (they cannot actually touch or administer drugs, but they can help out by handing them the container, etc.), holding a hand or walking the dog.

What's a palliative care team?

• Every situation is different, but the individuals involved are typically the sick person and family, friends, doctors, nurses, home care workers, social workers and volunteers.
• When there are concerns about the person's situation or a change in abilities, there can be a team meeting where everyone involved has input.
• The team members can keep a journal where they all record their experiences for each other to read and reference.

How much of what you provide is physical care, and how much is moral support or companionship?

• It depends. It can be different for any client on any given day.
• When there are concerns about the person's situation or a change in abilities, there can be a team meeting where everyone involved has input.
• For example, a client could have more pain when the weather was lousy, and she would need more physical care on those days. On "good" days, it was more emotional, spiritual talk.

What should one consider if thinking of bringing a terminally-ill loved one home?

• Don't fear it. Welcome the opportunity to have your loved one at home at the end of his/her life.
• If you are nervous or concerned, there are services out there that will help you. Your local hospice will help you set things up if you're uncertain how to go about getting home care, etc.