A Client’s Journey
You have just learned that you are suffering from a serious illness that may result in your death.
Illness presents human beings with an exceedingly difficult and contradictory challenge; you are not well, you may even be dying; yet it is in your nature to want to live. The gifts, challenges and questions that will arise for you are as unique as you are. Our volunteers are there to hold the space needed for you to explore what it means to be on this journey. Hospice volunteers can also provide navigation, practical support and connections for caregivers.
If you would like to refer yourself or another person to receive hospice information and support, click here
Frequently Asked Questions
What is Hospice Palliative care?
Hospice palliative care provides physical, psychological, social, spiritual, and practical support to people living with a life-threatening illness and their loved ones. Palliative care is for anyone with a serious illness. You can have it at any age and any stage of an illness, and you can have it along with curative treatment. It is not dependent on prognosis.
When should a decision about requesting hospice support be made?
Where is hospice palliative care provided?
As Nelson Hospice is not a stand-along residential hospice, hospice palliative care is provided in the hospital, care facilities, or the patient’s home. At this point in time, there is no stand-alone hospice facility in Nelson. Therefore, it is not unusual for service to begin in the house and then transfer to the hospital or care facility depending on the level of care required.
Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
The patient and family should feel free to discuss hospice care at any time either directly with Nelson Hospice, or with their physician, other health care professionals, clergy, or friends.
What if our physician doesn’t know about hospice? Most physicians know about hospice. If your physician wants more information about hospice, it is available from all three offices of Nelson & District Hospice Society and the BC Hospice Palliative Care Association.
Are there any special equipment or changes I have to make in my home before hospice palliative care begins?
Community home nurses typically assess what equipment would be most appropriate in your home. After this assessment, the nurses will make requisitions for hospital beds, commodes, wheelchairs and other items that make care easier. Most equipment is available at no cost to the clients as it is covered by the BC Palliative Care Benefits Plan.
How successful is hospice palliative care in battling pain?
Will medications prevent the patient from being able to talk or know what’s happening?
Does hospice provide any help to the family after the patient dies?
How many family members or friends does it take to care for a patient at home?
There’s no set number. One of the first things a hospice palliative care team will do is to prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Hospice works closely with home nursing, community health care workers, family and friends to provide the most comprehensive care possible.
Must someone be with the patient at all times? In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, most families want someone to be there continuously for companionship and safety. While family and friends deliver most of the care, hospice volunteers can assist with errands and provide a break and time away for primary caregivers.
How difficult is caring for a dying loved one at home?
It’s never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can be very long, lonely and scary. Hospice can also provide trained volunteers to provide “respite care,” to give family members a break and/or provide companionship to the patient, including overnight vigils in the last few days of life.
What specific assistance does hospice palliative care provide home-based patients?
Does hospice do anything to make death come sooner?
Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of childbirth, hospice provides its presence and specialized knowledge during the dying process.
Where is most hospice palliative care delivered?
Are there provincial or national hospice palliative care associations?
The Canadian Hospice Palliative Care Association (CHPCA) is the national association that provides leadership in Canada’s hospice palliative care. CHPCA offers leadership in the pursuit of excellence in care for approaching death so that the burdens of suffering, loneliness and grief are lessened. The BC Hospice Palliative Care Association fulfills a similar role provincially.
Why should we talk about death?
Death has been remote, hidden away in the backrooms of hospitals. Although it is changing in our culturally rapidly today, there still may be a taboo about talking about death even though it is a normal part of life. Everything that lives dies. Family and friends must be aware that dying persons have special needs that can be met and the best way to address this is through open and compassionate discussion amongst family and friends.
What if a client wants to pursue Medical Assistance in Dying (MAID)?
If a client wants to get more information about MAID, speaking to their nurse or doctor is the first step to getting information about the process, and to discussing all the reasons why MAID is sought. If a client or family member is struggling with decision-making around MAID, hospice volutneers will listen with empathy and non-judgment to whatever the client is struggling with.
Important Facts About Pain Management
Having a serious illness, even cancer, does not always mean having pain. For those with pain, there are many different kinds of medicines, ways to receive the medicine, and non-medicinal methods that can relieve the pain you may have. You should not accept pain as a normal part of being ill. When you are free of pain, you can sleep and eat better, enjoy the company of family and friends and continue with your work and hobbies.
Only you know how much pain you have. Telling your doctor and nurse when you have pain is important. Not only is pain easier to treat when you first have it, but pain can be an early warning sign of the side effects of any treatment you may be receiving.
Pain can often be relieved
There are many different medicines and methods available to control cancer pain. You should expect your doctor to seek all the information and resources necessary to make you as comfortable as possible. However, no one doctor can know everything about all medical problems. If you are in pain and your doctor suggests no other options, ask to see a specialist or have your doctor consult with a specialist. Pain specialists may be oncologists, anesthesiologists, neurologists, or neurosurgeons, other doctors, nurses, or pharmacists.
In Nelson, our community palliative rounds team includes nurses, hospice workeres, community paramedics, palliative physicians and social workers, all of whom work together on individual cases to help control pain and other troubling symptoms of serious illness.
Controlling and managing pain is part of the palliative approach to care of patients with serious illness
Your doctor wants and needs to hear about what works and what doesn’t work for you. Knowing about the pain will help your doctor better understand how your disease and any treatments are affecting your body. Discussions about pain will not distract your doctor from treating the illness you have.
Preventing pain from starting or getting worse is the best way to control it.
Pain is best relieved when treated early. You may hear some people refer to this as “staying on top” of the pain. Do not try to hold off as long as possible between doses. Pain may get worse if you wait and it may take longer, or require larger doses, for the medicine to give you relief.
You have a right to ask for pain relief.
Not everyone feels pain in the same way
There is no need to be “stoic” or “brave” if you have more pain than others with the same kind of illness. In fact, as soon as you have any pain you should speak up. Telling the doctor or nurse about pain is not a sign of weakness. Remember, it is easier to control pain when it starts rather than waiting until it becomes severe.
People who take pain medicines in a palliative context rarely become addicted to them.
Addiction is a common fear of people taking pain medicine
Such fear may prevent people from taking the medicine. Or it may cause family members to encourage you to “hold off” as long as possible between doses. Addiction is defined by many medical societies as uncontrollable drug craving, seeking, and use. When opioids (also known as narcotics) — the strongest pain relievers available — are taken for pain, they rarely cause addiction as defined here. When you are ready to stop taking opioids, the doctor gradually lowers the dose. By the time you stop using them completely, the body has had time to adjust. Talk to your doctor, nurse, or pharmacist about how to use pain medicine safely and about any concerns you may have.
Most people who are seriously ill do not get “high” or lose control when they take pain medicines as prescribed by the doctor
Some medicine can cause you to feel sleepy when you first take them. This feeling usually goes away within a few days. Sometimes you become drowsy because, with the relief of the pain, you are now able to catch up on the much needed sleep you missed when you were in pain. On occasion, people get dizzy or feel confused when taking pain medicine. Tell your doctor or nurse if this happens to you. Changing your dose or type of medicine can usually solve the problem.
Side effects from medicine can be managed and often prevented.
Some medicine can cause constipation, nausea, vomiting, or drowsiness
Your doctor or nurse can help you to manage these side effects. Many side effects can be managed by changing the medicine or the dose or times when the medicine is taken.
Your body does not become immune to pain medicine.
Pain should be treated early
It is important to take whatever medicine is needed at the time. You do not need to save the stronger medicines for later. If your body gets used to the medicine you are taking, your medicine may not relieve the pain as well as it once did. This is called tolerance. Tolerance is not usually a problem with palliative pain treatment because the amount of medicine can be changed or other medicines can be added.
Links about pain issues related to hospice palliative care
Canadian Virtual Hospice has a guide to palliative pain management, as well as resources for other symptom concerns for palliative patients. Canadian Virtual Hospice
“The welcome and the absolute spaciousness offered by the staff and volunteers is remarkable, almost like air. There is room to breathe and to find out a little about who one is at this point in one’s life, unencumbered by someone else’s ideas about what might be needed or wanted”
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Nelson & District Hospice Society works closely with healthcare providers, counsellors, therapists, clergy, and pharmacists to provide compassionate care and support for the dying and the bereaved in our communities.