Palliative Care – a Human Right – so apparent during COVID

Deaths from COVID-19 are approaching 3 million world-wide. Much of the discussion about ethical issues has centered around the availability of ventilators, but little has been said about the need and the responsibility to provide palliative care, ways to integrate a palliative approach for those who are seriously ill, and how to best support those who may or many not get (or want) a ventilator.

In Ontario palliative care specialists helped and provided care in the long term care facilities hardest hit by COVID. But specialist cannot do this in isolation.

In the Journal American Medical Association, article titled, “Integration of Palliative Care into All Serious Illness Care as a Human Right” Rosa, Ferrell and Mason wrote:

“COVID-19 has highlighted that every clinician needs knowledge and skills in the fundamentals of palliative care.“

Palliative care is not dependent on life-saving interventions. It may very well include a ventilator, but it is ultimately structured around the individualized wants and needs of the patient. It includes alleviating suffering and managing complex communications, psychosocial dynamics, fluctuating symptom management needs, and spiritual care throughout the dying process.

Every patient treated with a ventilator also needs palliative care. It is not an either-or clinical proposition, but rather a both-and moral imperative.

COVID-19 has accentuated the need for clinicians to have frequent conversations with patients and families about dying. The pandemic has forced many healthy people to confront rapid-onset, life-threatening trajectories of acute illness. Patients are dying without their loved ones, and families are grieving alone. For every person who dies, an average of 9 others are profoundly affected and grieve.2 COVID-19 has interrupted the cultural and community practices for coping with death, raising concerns about the pervasiveness of grief and loss associated with the pandemic…. 

Access to palliative care is a human right. Our inability to deliver it in the setting of COVID-19 and other serious illnesses is a human rights violation. Education… is needed now.

Personal Support Workers and nurses (both in field and in training), like all health care providers, need the tools and foundation to know how to support individuals living and dying with COVID-19 or living and dying with any life-limiting illness. Now.

Providing Care During COVID

On Monday, Dr David Kenneth Wright spoke during the “FREE WEBINAR SERIES for PSWs about providing care during COVID. I was touched by the stories he shared, by the points that he made, and by the responses/input from those who attended.

Near the end of his presentation he said and asked, “COVID-19 has changed so much in the world, but what should it NOT change?” Participants responded:

  • Love and respect for each other
  • Our level of empathy and kindness
  • Compassion and care
  • Care providers dignity and respect

I am inspired by their spontaneous thoughts. I agree, that DURING COVID we should KEEP our compassion, care and concern.

Then I reflected on the things that changed during COVID that I WANT TO KEEP AFTER COVID. The first two that come to mind are:

  • Doctor appointments online
  • A slower, gentler calendar

Then I reflected on the things that I can’t wait to change after COVID. My first three thoughts are:

  • Hugs – giving hugs, long hugs, group hugs, strangle hold hugs, happy hugs, sad hugs… hugs with people I know and hugs with strangers
  • Seeing, being with, hugging and holding grandkids!
  • Gatherings with more than our bubble – in fact, a bubble bath of bubbles and friends, a dance with CCR, and a pot luck feast.

What are the things that you want to keep now, during COVID? What are the things that you want to keep AFTER COVID? What are the things that you can’t wait to change?

Have a great day!

And a time to cry….

 

I wrote this reflection on Jan 31 ,2020, a year and a week after our son Geordie died,

At this one year mark, I #GIVETHANKS for family, friends and colleagues who supported and encouraged us, buoyed us up, laughed and cried with us, mourned with us, and comforted us. They are all excellent examples of #CompassionateCommunities and of #Griefliteracy. 

As I look back on this year, I consider that this year was a time to cry ( #TIMETOCRY ) – this was a year of sorrow. I allowed myself to feel it, embrace it, go with the flow – go with the flood of tears. This first year was my time to cry. There were times when I did not cry, and there were times when tears came frequently and in abundance. And there were times when I laughed and cried at the same time.

I like the idea that tears wash out toxic waste – that must make me pretty clean!!

The metaphor of helping large physical wounds to heal can help us understand ways to support a person to heal following loss.

The healing of large open wounds (for example pressure sores caused by lying in one position for too long) can be facilitated by:

  • allowing the open wound to heal from the base up (vs trying to suture the edges together as one would with an incision),
  • permitting the serous fluids produced at the site to moisten the wound bed,
  • providing the person with good nutrition, and
  • positioning the person to avoid direct pressure on or near the wound.

Grief is a whole person, natural process by which a person adapts to life without the person/object that has been lost.  Grief is the healing process. Like wounds, grief may be supported by:

  • allowing the wound caused by the loss to remain open, to not try to cover it up, suture it up, and fix it quickly. In other words, allowing the wound to heal from the inside out.
  • allowing sorrow to be felt and experienced and allowing tears to flow. Perhaps tears also provide nourishment to our soul.
  • providing good nutrition – providing healthy food, casseroles, salad, nourishing drinks support the griever to do the work of grieving,
  • permitting, encouraging time away, away from work, away from major stresses (compassionate leave) and decreases pressure on the whole person supporting healing.

Being open to the sorrow, permitting tears to flow, striving to eat (or provide) healthy foods, have all helped this year in healing my wounds, in grieving my loss.

Moving into year two

And now… As I move into year two from Geordie’s death…On a head level I am hoping that I will cry less and feel less sorrow in the coming months. (A counsellor smiled when I said this and suggested to me that that might not be possible. That I may not have control over that sorrow :)) But, I would like to give it a try. (Perhaps you, like the counsellor are thinking, “Well good luck with that Kath! You do not get to choose!”)

In scriptures there are references to learning that happens “in your heart and in your mind.” I sometimes joke that “my head got the memo that Geordie is just fine in this place of life after death but my heart did not yet receive the memo – hence the tears”. So, perhaps this year, I will see about helping my heart get the memo.

My plan of the moment is this: When I am talking or reflecting and find myself starting to cry, then I will ask myself if this conversation or this reflection is helpful and if I want to “go there”. I will ask myself if I want to cry or if another road might work better for me in that moment. If I want to take a different road, I will breathe deep, change my tone, speak from my head and not my heart, and continue with that conversation…. OR …. I will suggest that we change the topic or change the reflection.

One week into this plan I am finding that asking myself these questions is giving me options, and allow me an escape from the ongoing sorrow.

In defense of tears…. I need to be very clear…

It is not that I think that crying is bad, or that tears are bad! Not at all!! As I mentioned above, tears can help provide moisture and nourishment. And I am queen of crying! It is just that crying can feel soooo exhausting. And sorrow is so sad…. and for a while I would like to try something else. Geordie was all about living fully, and facing life head on. So, in the coming weeks/months I will just remember that I may have a choice to cry or not to cry, to talk or not to talk, to reflect or not to reflect…. and can chose what would be the best for me at that time.

I #GIVETHANKS for friends and family who have permitted me to cry as much as I like over this past year and they encourage me to continue to cry as long as I need/want to.

I #GIVETHANKS for those who have expressed appreciation for my sharing of my grief and have allowed me to be open in my grief. 

This posting today, is one step in this journey. And tomorrow I may be writing again about the benefits of tears, and a year from now I may write that my second year after Geordie’s death was just as sad as my first….and you my friends and colleagues will get to witness that grief has it’s own timeline…

All the best to each of you in grieving, learning, loving and living. May you be supported in #compassionatecommunities. #griefliteracy.

Hugs from a virtual distance – with hopes for more hugs in person by the end of 2021!

Kath