Living and Dying at Home

Just as being born is part of living, so is dying.  Three-quarters of Canadians wish to die at home, yet nearly 70% of deaths are in hospital and only 15% of Canadians actually do die at home.  As a caregiver, it is often your efforts that make it possible for a loved one to die at home if that is their wish, but a late stage hospital admission should not be seen as a failure.  Success can sometimes be found in enabling your person to stay home much longer than they would be able on their own.

In the article, How to Recognize When Your Loved One is Dying, the dying process is outlined and further broken down into what you may observe

• 1-3 months prior to the death
• 1-2 weeks prior to the death, and
• a couple of days to hours prior to the death

Some questions to take into account to decide whether you are able to begin, continue, or complete the caregiving journey with your loved one can be found on page two of the Where to Begin guide. They include considerations such as whether you feel confident in taking on this role, are able to balance caregiving with your other responsibilities, and believe you will be able to manage the inevitable stress.

Many practical topics are covered in this section.

1. Getting and Staying Organized
2. Preparing your Home Environment
3. Encouraging Visits from Family and Friends
4. Asking For and Accepting Help
5. Personal Care
    - Options for Home Care
    - Helpful Canadian Virtual Hospice Resources and Videos
    - Incontinence Care
    - Medication Management
    - Nutrition, Hydration, and Oral Care
    - Home Health Equipment
6. Pain Management
7. Symptom Management
    - Nausea
    - Constipation and Diarrhea
    - Breathlessness
    - Delirium
    - Fatigue
    - Weight loss
    - Depression
    - Existential Distress, Pain, and Suffering
    - Emotional Support
    - Spiritual Support

1.  Getting and Staying Organized

The most important tool in your caregiving role may well be a notebook - small enough to fit in your purse or pocket, yet large enough to serve its many uses.  You can use it to track symptoms, note changes you observe, organize appointments, note clinician comments, schedule helpers and respite workers, and to keep important contact information and medication reminders.  You can find several templates, resources, and checklists in The Caregiver's Handbook which can be viewed or downloaded from our website.  Please contact our team if you wish to receive one in person.

It can be difficult to keep straight all of the healthcare providers who serve your loved one and you.   If you are unsure which discipline is provided by a healthcare provider, please ask them so you have a better understanding of their function.

If your care recipient is leaving the hospital, it is likely that their care needs have changed.  Discharge planning is an essential conversation prior to going home and you should be part of it, including the development of a care plan and clearly stated goals of care.  The article Discharge Planning will help you understand the importance of this process and your role in it.  It is important to share your concerns and state your limitations, whether they relate to your responsibility to your job or family, your worries about lifting, supporting, or transferring your person, tasks that make you uncomfortable, or about whether you feel you can manage in this role.  The last few pages of the article include a list of questions that may help you prepare for that discussion.

Although it is something we often try to avoid, there may be a readmission into hospital.  The article Treated and Discharged: How to Avoid Repeat Hospital Visits can provide you with some basics, although it does not cover all aspects of a palliative approach to care or to end-of-life care.  If there is a trip to the Emergency Department or a readmission, remember to take all medications with you.  If you have a Vial of Life, that can help provide information if you or your loved one are feeling overwhelmed.   And remember to bring your Green Sleeve of information if your care recipient is receiving treatment for a chronic illness from a palliative care specialist team.

It is important to note that if death is close, you may want to inquire about registering with the Expected Death at Home (EDAH) program.  Both the brochure and form are available online.  When an expected death at home that has been registered with Palliative Care, there is no need for a doctor or nurse practitioner to visit the scene or sign a death certificate immediately.  This can be done at any time during the next 24 hours.

Understanding what will happen without the EDAH form is ample motivation to ask about this program.  Any unexpected death must be treated by law enforcement as suspicious until deemed otherwise.  When there is an unexpected death at home and 9-1-1 is called, Emergency Health Services staff must contact the RCMP or municipal police.  They are legally required to inspect the scene of the death before others are permitted near the body.   The funeral home may not remove the body until police services give their approval.

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2.  Preparing your Home Environment

Before your loved one comes home from the hospital, you will need to prepare.  The article Transition of Care from Hospital to Home will help you get organized regarding supplies, safety features, and changes in diet.  A second article When the Living Room Becomes the Bedroom is a more in-depth look at how to manage this major change to your physical space.  It shares information on including your care recipient's personal items, making way for visitors, dealing with extra equipment, thinking about privacy, and making the room as practical and comfortable as possible.

Keeping a guest book will help keep track of visitors and it can also provide some lasting memories.  Information on special visits or moments, comments made, and stories told by the dying person and others, could all be recorded.   Some family members may want to write poems or messages.  Visiting health care providers can also be asked to read the book and write in it.

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3.  Encouraging Visits from Family and Friends

This can be a rich and meaningful time in your loved one’s life.   But visitors can be exhausting for them as they try to focus and take part in the conversation.

It can be difficult to strike a balance among making sure that your loved one is not becoming too weary, on wanting them to have enjoyable visits, and on allowing for the possibility of those deeper conversations that may come at end-of-life.  If your person is too polite to call an end to a visit, perhaps you could work out a signal that will alert you to someone overstaying their welcome.

If there are drop-in visitors and your person naps during the day, you may opt to put a sign on the door that reads, “We are napping and would be happy to see you after 3 pm.”  It is both clear and welcoming.

Some people experience discomfort at visiting a dying person and become tongue-tied or will babble.  The article Talking to a Dying Loved One may provide you with some tips to pass along to those who wish to visit but are shy of the situation.

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4.  Asking For and Accepting Help

While realizing that your care recipient is becoming increasingly fragile, you must also recognize your own vulnerability as the caregiver.  You are managing the difficult task of tending to your loved one’s needs while wrestling with powerful emotions of your own.  Now, more than ever, you will need assistance and support.

You may well want to be self-sufficient, a characteristic you have been proud of throughout your life.  But these are extraordinary circumstances, and this may be the time to set those ideas aside and accept help when it is offered.  Keep in mind that by asking for and accepting help you are allowing someone else to have the satisfaction of feeling that they have made a difference for you when you needed them most.

When a relative or friend asks if there is anything they could do to help, it is hard to muster a to-do list in your head and instantly know which task would best suit the helper.  Keep a running list on the fridge door to which you can refer the helper, like choosing from a menu.  A Helper Sign-Up Sheet will allow the volunteer helper to choose something they are comfortable with and able to achieve from several tasks listed.

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5.  Personal Care

Until the need arises, many of us had not expected to perform personal care.  Then we take a deep breath, acknowledge that we have no skills or training to give this type of care and dive in.

Personal care covers a wide range of tasks from doing hair to managing incontinence.  Considering the list of duties on page 3 of the Where to Begin guide, it is important to ask first what our care recipient can continue doing for themself.  Are they able to brush their teeth?  Can they still manage their own bathing but need assistance in and out of the tub?  Perhaps they can still manage most of the tasks themselves.  Often a person’s dignity is tied to their self-reliance, so helping your person remain as independent as possible is in everyone’s best interest.

5.1  Options for Home Care

If personal care is needed, the next decision is whether it is a task you are able to do or if a professional healthcare provider should be contacted.  As a potential caregiver, what is your level of comfort giving personal care?  If intimate care is needed, is it for an opposite sex parent, a sibling, or your spouse?  Depending upon the nature of the relationship, your care recipient may or may not be comfortable in receiving personal care from you and may prefer that a stranger provide personal care.  If you or your care recipient would be uncomfortable in your giving personal care, home care services can be provided by trained professionals on a regular basis.  There are a few options.

• Home Care is available through Continuing Care which is a branch of the Nova Scotia Department of Health and Wellness.  As well as personal care, they can provide light housekeeping, meal preparation, and respite care so you can take a break and focus on your own needs.  A full explanation of this service, as well as the fee structure, is available by clicking the link above.  What you pay is based on household income. This web page also includes information on the Palliative Home Care program and the Palliative Home Care Medication Coverage Program.
• Private home care providers are available throughout the province.  Using this link, selecting your region of the province will provide a listing specific to your area.  Although this is a more expensive option, you may be able to arrange for consistent staffing which can be important if your care recipient is uncomfortable with strangers in the house or if they have some level of cognitive decline.  If they have been diagnosed with cognitive impairment and over 65, or if they have dementia and are under 65, they may be eligible for the Supportive Care Program to help offset the cost of hiring privately.
• Hiring an individual or a team of individuals yourself is yet another option.  They can be less expensive than a private home care agency, however, you will be solely responsible for vetting applicants.  The Nova Scotia Respite Hiring Guide may give you some guidance in interviewing, hiring, training, or terminating your staff.   The Supportive Care Program may be able to assist with the cost of hiring your own staff.

If you are able to give personal care and your person is willing to receive your care, there are a few things to keep in mind.

First, it’s always a good idea to consult your doctor or nurse practitioner about the new duties you will be taking on in case they have concerns.

Lifting, supporting, and transferring your care recipient may be required.  We have linked videos to help you to reduce the potential of a back, neck, or shoulder injury on the Living Safely at Home page of our website including transferring from bed to chair, moving up in the bed, turning over in bed, providing help with walking, getting in and out of the car, and helping someone up from a fall. Your Palliative Care or Senior’s Clinic team may be able to send an occupational therapist to your home to help set up the environment or give you some training in safer lifting.

You might also consider contacting your local pharmacy and speaking with someone in the Home Health Department about products such as transfer sheets and boards, pivoting turntables, and lifting belts that will further protect you and the person for whom you are providing care.

Another section of our website has information on how to minimize falls risk in your home and on what to do if your person falls.  Our instinct is to immediately help them up, but that can sometimes aggravate an injury or cause further damage. It's worth mentioning that you can call 9-1-1 and request a lift assist if your loved one has fallen and you are having difficulty getting them up. This service is free unless your person needs to be transported to hospital. 

5.2  Helpful Canadian Virtual Hospice Resources and Videos

The Canadian Virtual Hospice has a wide variety of helpful personal care videos.

Caring for Hair and Face - includes tips and videos on hair washing in bed, shaving, looking for pressure sores, massage to help blood circulation, and pillow placement for support.  Watch videos at bottom of page.

Preventing Pressure Sores - helps you give preventative skincare, reduce pressure on at-risk areas, and reposition your person in their bed.

Help with Bathing - covers general tips, sponge baths, and a video on giving a bed bath.

Mouth Care - offers tips and a video on everyday mouth care, supplies, positioning, monitoring for issues, denture care, and dry mouth.  Please note that Caregivers Nova Scotia offers a workshop Brushing Up on Mouth Care; contact your local Caregiver Support Coordinator for details.  Contact information is available at the bottom of every Caregivers Nova Scotia website page.

Help with Eating - focuses on food choices, lack of appetite, and providing practical tips.

Help with Toileting gives information on commodes, bedpans, catheters, and incontinence products.

5.3  Incontinence Care

There is a good video on this link that deals with managing incontinence including what supplies are needed, monitoring your person’s bladder and bowel habits, clothing selection, bedding, and skincare.

Handling urine or feces soiled material is something many of us may not have had to deal with for many years, so we must acknowledge “the yuck factor” when giving incontinence care.  Some caregivers find no difficulty, but many struggle with the task.

It is important to have everything you need at hand before beginning so you do not have to step away mid-task.  This includes gloves, a basin of warm water, soap or cleanser, disposable wipes, a waste can, washcloths, towels, and fresh clothing or bedding as needed.  A professional offered the following advice.  Keep a few peppermints in your pocket and pop one in your mouth just before beginning continence care; the smell of the peppermint will combat the odour of feces and will trigger you to swallow more often, helping to control your gag reflex.

Incontinence products, whether pads, liners, or briefs, can be expensive.  If you are unsure which incontinence products are best for your person’s needs, please speak to someone in the home health department at a pharmacy.  Inquire whether there are sample packs that will allow a product to be tried out before buying an entire package.

5.4  Medication Management

Medication management can be another difficult aspect of giving care.  If your loved one’s condition is expected to progress, if new health issues are identified, or if the course of treatment is new or not working, there may be many complex medication changes over time.

You will find articles and tip sheets on this topic as well as information about blister packs and medication reviews on this page of our website.  Check the Caregiver Tips at the bottom of that page where we discuss the steps involved in meds management which can be much more than a matter of giving the right medication in the right dose at the right time.

5.5  Nutrition, Hydration, and Oral Care

On the CNS website, we also have a comprehensive page on Nutrition and Hydration.  It includes topics such as dehydration and how to avoid it as well as information on nutritional risk.  We encourage you to speak to your healthcare provider if your care recipient is having difficulty swallowing to determine if they are at risk of choking.

There are methods of reducing the risk of choking or aspiration.  The University Health Network in Toronto has a good handout that will help you understand hand feeding and other important methods of minimizing aspiration.  For further information, please see the link below in the Research text box.

Oral health is essential for communication, eating, swallowing and speaking. Proper and regular oral care can prevent oral complications, help to maintain adequate oral function, and optimize a person's quality of life and overall comfort. For these reasons, daily oral health care needs to be an integral component of palliative care. 

An article from uptodate.com explains that "The oral cavity is often the first site of manifestation of treatment-related side effects in terminally ill patients, or it may be compromised by the direct and indirect effects of progressive, advanced disease."  You can also find more information on Oral Care at end of life here. 

5.6  Home Health Equipment

If your care recipient has developed weakness or is experiencing dizziness or problems with balance, you may need to consider the use of home health equipment.  Crutches, walkers, commodes, shower chairs, bed tables, bath seats, toilet seats, wheelchairs, and other items can often be found in your own community on loan.

The Canadian Red Cross has a comprehensive Health Equipment Loan Program (HELP), providing items for a maximum 90 day loan when you have a written order from a healthcare provider.  The Red Cross also manages the Hospital Bed Loan Program.

Other suppliers may include your local branch of the Royal Canadian Legion and the Easter Seals program, which has both assistive devices for loan and an equipment inventory online.  Most pharmacies have a home health department and can order items not carried in stock.

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6.  Pain Management

According to Bethany Cadman in Medical News Today, “Any pain control is a balancing act between the amount of pain a person is experiencing and the amount of medication they take. This involves a person taking a regular amount of pain medication at a dose suitable for their level of pain, but not too much, or they may experience undesirable side effects, such as vomiting, a reduced ability to think, and tiredness.”

Old school thinking was that pain medication had to be doled out sparingly lest the patient becomes addicted.  Today palliative care staff believe that addiction implies that there is potential for recovery, so it does not apply to end-of-life pain control.

It’s difficult to think of your loved one experiencing pain.  It can be frightening for you both, especially in the middle of the night when you can’t reach your doctor.  You may feel that your only option is the Emergency Department at the hospital, but this raises other issues.  How do you get your person into the car and across town when they are so weak?  How do you manage lifting and supporting when you are the only other person at home?  How do you manage their needs during a long wait at the Emergency Department?

Nova Scotia is very fortunate to have the EHS Special Patient Program.  If the major factor preventing your person from coming home and staying home is pain management, this program may be able to address your concerns.  All 1,400 paramedics throughout the province have been given specialized training to deliver this service.  This brochure gives greater detail but, essentially, the program enables paramedics to manage palliative symptoms such as pain, breathlessness, fear, and anxiety, all in the comfort of your home.  This is a reassuring service when fear is pushing the caregiver toward an Emergency Department visit.

If your loved one is not able to tell you that they are in pain or where the pain is located, the Abbey Pain Scale will help you identify signs of pain.  Your reporting of vocalization, facial expression, body movement, and other characteristics can help health care providers determine what, if any, treatment is needed.  If they are able to express themselves, you may still need to recall certain characteristics of their pain, so using the OPQRSTUV Pain Assessment may be a helpful guide.  Your input on behalf of your care recipient who cannot speak for themselves, or in recalling details, is vital.

Breakthrough pain is a spike of pain that is not addressed by the medication dosage for chronic pain.  Pain can become overwhelming or unbearable.  Even breakthrough medications are sometimes not able to control high levels of pain.  Palliative sedation therapy involves using medication to bring about unconsciousness or reduced consciousness if suffering becomes intolerable.  For further information, speak to your healthcare provider.

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7.  Symptom Management

The Edmonton Symptom Assessment Scale is a tool that uses the patient’s perspective in gauging their discomfort.  If your person is not able to speak for themself or is not able to think clearly due to pain, medication, or cognitive impairment, this tool may help you focus your attention on specific domains of suffering so you can report on your care recipient’s behalf.

7.1  Nausea

Nausea at end-of-life can be a difficult one to manage.  Whether it is due to constipation, medication, treatment, infection, anxiety, or a bowel blockage, nausea or vomiting increases suffering and decreases quality-of-life by limiting social interaction, sleeping, and eating. You may want to check with your pharmacist to see if this is an expected side-effect of medication.

This article on nausea and vomiting includes a description, causes, and treatments.

7.2  Constipation and Diarrhea

Problems with bowel movements are a very common symptom.  For some caregivers, bowel issues are not difficult to talk about or deal with.  But for some of us, constipation and diarrhea cause significant discomfort and can mark the threshold of transferring a person into care.

If you have been caring for your person for a while and can recognize unusual bowel patterns, this acronym may help you to recognize when there is a change.  Think D.I.S.H.

• Difficulty - more difficult having a bowel movement than usual?
• Infrequent - more frequent than usual?
• Size - smaller than usual?
• Harder - harder than usual?

7.3  Breathlessness

Breathlessness or dyspnea can be caused by a number of factors.  The cause can be psychological and brought on by panic or anxiety attacks.  It can also result from a medical condition (COPD, ALS, etc.) or an obstruction in the airway.  Breathlessness can also be caused by infection/bacteria (pneumonia) or ‘water on the lungs’ (pleural effusion).  Regardless of the cause, it can be a frightening symptom that warrants medical attention.

Medication may be available to reduce the discomfort of breathlessness, but there are also some non-pharmacy related strategies that may help.

• using a fan to blow cool air across the face
• repositioning in the bed and using pillows for propping and support
• elevating the head of the bed by 1-2”, or
• using pursed lips breathing to slow and calm the breath.

If your care recipient needs home oxygen, Continuing Care has a Home Oxygen Program that may help offset the cost of equipment and related supplies.

7.4  Delirium

Delirium is the quick onset of unusual behaviour and of an altered mental state that will usually reverse itself.  In many cases, it will involve confusion, fear, agitation, and hallucinations.  It is often brought about by medication, infection, dehydration, or a change in the environment.   It may also signify the beginning of an acute illness.

Delirium is often preventable and treatable.  Palliative care specialists tell us that if untreated, delirium will progress, that it can be fatal if not addressed, and the longer delirium continues, the harder it is to resolve.

The video Delirium Awareness reviews the symptoms, characteristics, and treatments (including non-pharmaceutical) for this condition.  Please note that statistics in the video are based on the UK healthcare system.

7.5  Fatigue

It can be exasperating when a life-limiting condition or a treatment can sap your loved one’s strength, but that is an expected part of the journey.  Your loved one may well be sleeping more and napping often. Completing tasks we usually take for granted, such as personal grooming, may leave them feeling exhausted and unable to engage in further activities.

The Canadian Virtual Hospice has a comprehensive article on fatigue.  It provides information on the causes and symptoms, what you can do, and what health care providers can do.

Conserving energy may mean discussing priorities with your care recipient.  What activities are important to them?  Who do they wish to see?  Is there somewhere they would like to visit?  Having a conversation that results in a list of your person’s wishes and identifies priorities can help with planning where their limited energy will be spent.

7.6  Weight Loss

Loss of appetite and resulting weight loss can be common among those with an advanced life-limiting illness.  This is often difficult for family members.  In our society, food is love.  When someone you care about is hurt, upset, or frightened you offer tea, make casseroles, or bring banana bread.  We look to food and nutrition for healing and comfort.

Lack of hunger may be a characteristic of a medical condition, a side effect of medication, or a result of nausea.  As the illness progresses, a person may be less interested in meals and more satisfied by snacking several times each day.  Nonetheless, there are some medications that are appetite stimulants and that can help them retain or regain the weight that may be vital to their wellbeing.

Our usual ideas and attitudes around food simply don’t apply at end-of-life. As the body is dying, food is not needed as we would expect.  You may need to shift your expectations to what is reasonably achievable given the circumstances.  In fact, to gently force your person to eat or drink when they are weak or sleepy may actually be a choking hazard.

7.7  Depression

According to one recent study, patients in advanced stages of disease may experience depression or anxiety.   Some of the characteristics that could alert you to depression would be a lack of energy or initiative, fatigue, weight loss, and a lack of appetite.  It can be confusing because many of these indicators are also part of the dying process.  The Geriatric Depression Scale may help you to identify when your person’s mood goes beyond the struggle of adjusting to the situation. 

7.8  Existential Distress, Pain, and Suffering

Many people with a life-limiting illness, especially as end-of-life nears, will struggle with their mortality, feelings of meaninglessness, and a loss of freedom.  Acknowledging the suffering of your loved one and your own may be all you can do. Listen with an open and caring heart, practice reflective listening, and curb the caregiver impulse to ‘fix’ everything.

7.9  Emotional Support

Perhaps you are now able to say what you have been unable to say until now.  The most important emotional support you may now be able to offer is the presence of people who care about her or him.  Particularly when you can’t be there, try to arrange for others to be there whose company your person would like.  They can sit quietly or talk in low tones about happy memories.

You may want to keep the five senses in mind when considering what may comfort your person.  Is there a flower or smell that will bring contentment?  For example, some folks are comforted by the smell of ginger cookies being baked - a memory of their childhood.  Perhaps there is a piece of music they would enjoy.  If they are able to take anything by mouth, perhaps a sip of their favourite soup would please them.  Are you able to take them outside to see and feel the warmth of the sun or hear the sounds of night?  Is there a pet whose company would be appreciated?

This article from MarieCurie.org.uk might help with your understanding of emotional distress.

7.10  Spiritual Support

At a time of high stress such as when coming to terms with a life-limiting illness, some people may seek out spiritual or religious guidance where they had not before, or they may re-examine their long-held beliefs.  Others may find spiritual guidance and support in nature, or another faith and belief system.

Dr. Christina Puchalski created the FICA Assessment which may help you or your loved one re-evaluate your satisfaction with your spiritual life or determine if a change should be made.

If you would like to learn more about how religious based cultures approach death and burial, Different Cultural Beliefs at the Time of Death may answer some of your questions.

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