Category Archives: terminal illness & caregiving

A Caregiver’s Dilemma: Is the Patient Better Off at Home?

In caring for someone we love the question arises, what symptoms can be managed?  What aspects of the situation are beyond the scope of a medical professional?

Beyond our capabilities?

When we know that someone we love is dying, we suffer too.  We have our own sense of loss to deal with, added to the uncertainty of our role in caring for our loved one. 

To even contemplate looking after a dying person at home is daunting, challenging. 

But we know that some who are familiar with these situations, like hospice nurses Callanan and Kelley, maintain that the best care for a person who is ill is most often that given by family and friends in the familiar surroundings of their home.

There are undoubtedly physical symptoms. 

Dry mouth, weight loss, fragile skin and pressure sores, nausea and vomiting, constipation, diarrhea or incontinence, and breathing difficulties are just a few.  No one patient will have all of these symptoms, but in general, some physical symptoms are to be expected. 

For most of these, medical professionals can offer remedies.  In others, keeping the patient comfortable can be a matter of routine. 

In Final Gifts, Callanan and Kelley suggest that most physical symptoms can be alleviated to a large extent.

Pain is best handled by giving regular moderate doses of painkillers, rather than ‘holding off’ until the pain becomes unbearable and then taking a large dose.  The authors state that regular pain medication in moderate dosage can be increased over time as the pain increases, and in the meantime, the patient will be more comfortable overall.

What can’t be controlled?  These are personal attributes: the patient’s temperament, their response to the situation in which they find themselves. 

Dealing with emotions and attitudes requires some detective work on the part of the caregiver, some skillful prodding. 

It is not possible for you, the caregiver, to sort out these issues but hopefully, by being aware of what the patient is feeling and needing, by listening to and discerning just what they are trying to communicate, you will be able to assist them in finding ways of dealing with emotional issues.

I cannot emphasize enough how helpful I have found the wealth of knowledge and sound, practical advice given in Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying.

These hospice nurses have learned a great deal about death and those who are terminally ill, and if you are in a situation of caring for someone on this final journey, this book is a travel guide that will see you both safely home.

What Dying People Want: A Resource Book by David Kuhl

Do you work with the terminally ill? Are you making that last journey with a loved one? Has someone you love just been hit with a dreaded diagnosis? Then David Kuhl’s book could be an important read for you.

I wish I had found this book when my husband was still alive.  And I wish every doctor, caregiver and member of the terminally ill patient’s family would take the time to read it.

David Kuhl speaks honestly about his experiences and emotions as a doctor.  The book clarifies not only the needs and desires of a dying person, but also the attitudes and challenges of the medical professional involved in diagnosis and treatment.

I found What Dying People Want: Practical Wisdom for the End of Life in the White Rock Hospice Library.  Leafing through the book, I realised that much of Kuhl’s research had been done at St. Paul’s, a Vancouver BC hospital where my husband was treated in the cardiology department over a period of twenty years.

I’m finding What Dying People Want:  Practical Wisdom for the End of Life an informative and compassionate read.  For those who suddenly find themselves face to face with their own or their loved one’s mortality, it’s a read I highly recommend.

Patients, Nurses, Doctors: What Caregivers Need to Know.

Have you ever felt betrayed by or angry at a health care professional?

Perhaps you thought you were not getting complete information about diagnosis and treatment plans.  Or maybe you felt certain aspects of the treatment, diet or delivery of medication could be done in a more effective and less intrusive manner.

Many of us who are caring for the needs of our loved ones, who act as advocates in the doctor’s office, at the nursing station and in the face of home care workers can find ourselves suppressing feelings of anger and resentment.

Both the patient and the caregiver may be reluctant to express concerns. Some simply may not know to whom or how they should put their questions.

For those patients and caregivers these unexpressed concerns can cause anxiety and even conflict with those in the health care community whose very job is make life easier for the patient.

Dr. Kuhl, a palliative care doctor, suggest that sometimes doctors and nurses can be so familiar with certain diagnosis, treatment plans, and even the hospital environment that they fail to take into account the patient’s lack of understanding of processes and terminology.

Ask questions, be proactive in your quest for knowledge about your condition, the diagnosis, the treatment plan and what all of this means for you or your loved one.

Decision making should involve your input.  Family and friends can assist you in this endeavour.

Why is it so important to understand what is happening and how?  Because Dr. Kuhl’s research has shown him that suffering is diminished by both the patient’s ability to understand his situation and his sense of having some control over the treatment path.

This column is inspired by Dr. David Kuhl’s book, What Dying People Want: Practical Wisdom for the End of Life.

A Compassionate Insight Into What Dying People Want by Dr. David Kuhl

What Dying People Want is a doctor writing about his very human journey through the suffering of the terminally ill and the desired emotional and practical responses from health care professionals. Most importantly, Kuhl addresses situations and how to approach them for best results, always bearing in mind that what the patient most seeks is some sense of control over his life and the treatment of his illness.

I remember it was always a hassle getting out the door on the morning of Chris’ doctor’s appointments.  He liked them to be early in the day, I think because he felt best able to cope then–his energy levels seemed slightly higher in the morning, though he soon flagged.

We lived a good thirty kilometres drive through rush hour traffic, and at the end, paid horrendous hospital parking lot fees.  Then there were the interminable hallways, steps and elevators to negotiate within St. Paul’s. For Chris, these sessions were exhausting.  Near the end, the toll on him was severe.

But he had been treated at St. Paul’s from the night of his very first heart attack, when we lived in the West End five minutes drive from the facility. And in the end, the young doctor who had treated him then became the head of St Paul’s Cardiology Department, and in the years between, he and Chris built up a good rapport.

So David Kuhl’s book, based on research done at St. Paul’s struck a chord with me.

Several aspects of the book appeal to me.  Kuhl introduces each chapter with quotes from patients, followed by an anecdote, legend or myth that speaks to the theme of each chapter.  He uses his own experiences and those of terminally ill people to illustrate their concerns.

I found it to be practical and profound. Any comments you may have on the book would be appreciated.  Just email me at

These next few blogs are based Dr. David Kuhl’s book, What Dying People Want., based on his research and experience as a palliative care physician serving at St. Paul’s Hospital in Vancouver, B.C.