As Lucy Kalanithi shares in her TED Talk “our job isn't to fight fate, but to help each other through. Not as soldiers, but as shepherds. That's how we make it OK, even when it's not. By saying it out loud, by helping each other through…”
It is by making these personal choices, that best align with our own values, that make living in the face of death possible.
The care we receive, especially at the end of life, is critical. So today, we’re taking a deep dive into hospice care. This is of course an already difficult and emotional time and it’s our hope this piece provides a helpful overview and brings some comfort and clarity in a sea of information.
One of the most important takeaways: hospice care provides the rightcare at the righttime.
What is hospice care?
“Hospice care attends to a patient’s emotional and spiritual needs at the end of life and prioritizes comfort and quality of life by reducing pain and suffering,” according to the definition shared inA Beginner's Guide to the End.
You can learn more about the difference between palliative and hospice care in a previous post here.Hospice care means:
- The patient has (projected/estimated) less than 6 months to live (some will live longer and some will live less)
- Curative attempts are no longer an option
- There is a focus on managing pain and other symptoms
- Enhancing quality of life as much as possible
There is no predetermined checklist of services that every hospice recipient receives and the care the providers offer has the primary goal of meeting the needs of the patients and families, meaning it’s entirely personalized.
Benefits of hospice care, according to the Canadian Hospice Palliative Care Association(CHPCA):
Pain management: find out what might be causing the pain and the appropriate ways to relieve it
Symptom management: help relieve some of these accompanying symptoms that may be causing distress, through knowledge and an understanding of the causes and treatments
Social, psychological and spiritual support: recognizing the importance of a person’s physical and mental health, emphasizing our need to provide various supports to both the individual and their family
- Advice and assistance from healthcare providers and medical professionals
- Instruction on how to treat and care for the person (how to administer different medications, how to make sure the person is comfortable, how to recognize the signs of when the person is close to death and what to do when you spot those signs etc.)
- Support services that provide assistance with household tasks such as: meal preparation, shopping and transportation
- Systems that can provide relief for the caregiver including: in house volunteers, day programs, temporary or permanent stays at long term care facilities
While the (CHPCA) doesn’t list bereavement support as one of the benefits it is a very important part of the care provided by the hospice team. While the offerings will differ, it’s typically a part of the overall treatment plan. This support will mostly center around grief support and providing guidance about decision making both leading up to and following the death.
- For example, Hospice Toronto provides a program that includes:
- Short term individual sessions with a Client Services Coordinator (CSC)
- Bereavement Peer Based Support Group led by a CSC
- Volunteer one on one support calls
Qualifying for hospice care
- Living with a terminal illness
- Physician’s certification
- This sounds fancy and it simply means you need to talk to your doctor about completing the necessary documentation
In Ontario to be admitted the patient needs to qualify for Ontario Health Insurance Program (OHIP) and have a referral from their Local Health Integration Network (LHIN)
Some hospices also require medication lists, detailed medical documents or doctor-to-doctor referrals
When to consider hospice care?
Seeking a referral sooner rather than later will help ensure that the patient passes comfortably and with dignity, and that caregivers are also supported throughout the dying and bereavement process.
If the care will be at home, it’s needed when:
- Pain is not relieved by the prescribed dose of pain medication
- Discomfort, such as grimacing or moaning
- Trouble breathing or seems upset
- Unable to urinate or empty their bowels
- A fall has occurred
- Seems depressed or talks about committing suicide
- Has difficulty swallowing medication or refuses to take medication
*Caregivers should also consider hospice care when they feel overwhelmed.
Where is hospice care available?
- At home
- If the plan is also to die at home then an at-home death plan also needs to be considered
- Long-term care facilities
- Hospices (a home for people living with a terminal illness)
According to the Government of Ontario here’s what you need to know:
What types of services are provided?
- Physician and nursing services assess and manage the progression of the illness (includes providing pain and symptom management to improve comfort and quality of life)
- Personal support services (e.g., homemaking)
- Other services, such as physiotherapy, caregiver support, pharmacy, social work
How to access palliative care?
- Primary health care provider (e.g. family doctor). Many types of palliative care are provided directly by primary health care providers who are already treating individuals for disease and when more specialized services are required, primary health care providers can provide appropriate referrals
- Local Local Health Integration Network can refer you to hospice or other support services
- Local hospital
- Long-term care home
What does it cost?
- “There is no cost to patients for medically necessary palliative care services in their homes, hospices, or hospitals.”
- “This includes any treatments that a physician may provide. While residents of long-term care homes may pay a co-payment, these funds represent the individual's contribution to food and accommodations—not palliative care services.”
What support exists for caregivers?
- “There are a variety of supports available to caregivers in Ontario. These may include respite care or hospice-based bereavement.”
Care and medical assistance in dying:
- “As of June 6, 2016, medical assistance in dying will be permitted in Canada. This will not change how Ontario patients with life-limiting illness access other medical treatments, including palliative care.”
- “Based on the experience of other countries, only a small number of Ontarians will choose to access medical assistance in dying. Patients with life-limiting illnesses will generally choose to access palliative care and other treatments.”
How to ensure hospice care needs and wishes are met:
It’s important to talk over wishes with your family and let them know what you want. In the event that you’re unable to communicate it’s a good idea to put your wishes into writing (these documents are called advance directives or living wills). It’s best to seek advice within your region, as the laws vary from province to province.
What is Advanced Care Planning (ACP)?
A process that encourages patients, family members and health care providers to talk about patients' health care wishes, in case there comes a time when the patient may not be able to make his or her own healthcare decisions.”If there is an ACP in place at end-of-life it can eliminate difficult management questions for families and attending physicians concerning palliation and hospice and end-of-life care.
ACPs and hospice care:
At the onset of the diagnosis it’s helpful to sit down with family and your care team to make ACP decisions. This way, the person’s wishes can be integrated into their overall care plan and it also informs everyone involved in the care of the patient’s wishes at end-of-life
While these conversations can of course be difficult, they support patient-centred care and ensure family and friends are able to better navigate the stress and uncertainty that comes at an already emotional time.
Kalanithi asks “would you want to be on life support if it offered any chance of a longer life? Are you most worried about the quality of that time, rather than quantity? Both of those choices are thoughtful and brave, but for all of us, it's our choice.” And so, it’s important to know what these choices are so they can be respected and carried out.
She goes on to say, “I realized that completing an advance directive is an act of love… A pact to take care of someone, codifying the promise [of]... I will be there. If needed, I will speak for you. I will honor your wishes.”
What are the signs death is approaching?According to the Hospice Foundation of America, there will be physical changes (breathing), changes in consciousness (may be fully awake or unresponsive; hearing is one of the last senses to lapse before death), as well as sensory changes (illusions, hallucinations, or delusions).
- Speak and move less
- May not respond to questions or show little interest in their surroundings
- Little, if any, desire to eat or drink
- Body temperature can go down by a degree or more, so as you hold his or her hand, they may feel cold
- Blood pressure will also gradually lower and blood flow to the hands and feet will decrease
- The skin of their knees, feet, and hands may become purplish, pale, grey and blotchy (when death does occur, the skin turns to a waxen pallor as the blood settles)
For more information on the death care process, you can visit this link.
Hospice care will not cure the illness. Instead, it presents us with a choice, as Kalanithi says, to engage “in the full range of experience—living and dying, love and loss.” “Being human doesn't happen despite suffering. It happens within it. When we approach suffering together, when we choose not to hide from it, our lives don't diminish, they expand.”
And while there is nothing that will eradicate the reality of death, hospice care can and will make sure your healthcare matches your values, and that death will be, if only by a fraction, a little bit easier.
We’re here to support you. Visit www.eirene.ca to learn more about our offerings.