Palliative Care Team Followup

A huge shout-out to Jennifer Kim. To my surprise and delight, a local company delivered a beautiful floral arrangement that I have placed in my line of sight. I do love having fresh flowers in my home.

Jennifer is a long-time friend who I met originally when she was a Team Member at the Horizon Wimba company. That goes back to early in the century. I haven’t heard from her for years but she noticed my mention of enjoying fresh flowers on Facebook. She sent the following message:

Dear Phil – I’m not sure if you remember me, but I worked at Horizon Wimba when you were teaching online. Since you mentioned on Facebook liking fresh flowers, I wished to send you some, as thanks for being such an inspiration to myself and others! – Sincerely, Jennifer Kim.”

What a wonderful and uplifting moment for Thursday afternoon and yes I do remember her.

Janet and I met Dr. R. Grant and Cindy Bell yesterday (October 28th) as a follow-up to the initial meeting. They are members of the Palliative Care Team of the Nova Scotia Scotia Health Authority. There are teams at locations throughout the province. Palliative care enhances the quality of life of people with a life-limiting illness. It does this by preventing and relieving suffering. My personal experience is positive and topics have come up I wouldn’t have thought about on my own. For more information, click the link at the end of this sentence.

We discussed my general health, blood work, my new Chemo treatment, current activities such as travel, and end-of-life planning. Later in the session, we reviewed a document titled “Goals of Care” and updated it with my current thinking on CPR. Originally I said yes to CPR and if I came back without brain activity, turn off the power.

The following are requirements for how this doc is filled out:

  • Are completed or overseen by an Nurse Practitioner (NP) or senior MD (R2 or above) member of the attending team.
  • Are intented to ensure patients do not recieve inappropriate, unnecessary, or harmful interventions.
  • Must be completed for all patients with 24 hours of admission to hospital.

The first order is:

Who is making medical decisions? – my selection is bold and red

  • The patient demonstrates capacity for medical decision making.
  • The patient does not demonstrate capacity for medical decision making, therefore a Substitute Decision Maker (SDM) is making medical decisions.
  • The patient has an advanced directive.

The second order is:

Levels of Intervention (Select one) – my selection is bold and red

  • Comfort is the primary goal of care. Only investigations and treatments directed towards improving comfort are indicated. No CPR. No ICU transfer.
  • Ward based treatments + comfort. Utilize IV fluids and medications to prolong life. Specific treatment preferences can be indentified below. No CPR. No ICU / IMCU transfer.
  • Consider IMCU / ICU / CCU. No CPR.
    If checked off, the following are accepted when clinically indicated: (select all that apply)
    • non-invasive respiratory support
    • intubation
    • electrical cardioversion
  • Full Code with any potential effecive treatment including CPR
  • Discussion deferred / Concensus not reached (Full Code by hospital policy)

The important takeaways are:

  1. Should my heart stop, it will not be restarted. There are a couple of reasons for this decision. The most important is I think that this will only occur when death is imminent and it is simply my final organ failure. The other reason is that CPR is aggressive, likely painful, and I will propably end up with injuries such as broken ribs. The bottom line is there is no value in resusitation at I approach the end of my time on our blue dot called planet Earth.
  2. Should I get a cold or minor respiratory infection due to my comprimised immune condition, my preference is I’m treated for such a condition so I can continue to spend time with Janet, family, and friends as long as possible.

Dying at Home Decision – Minor Change

During this time of a global pandemic, there are limits on how many people can visit patients in the hospital. With a family of five children, two spouses, and one fiance the visitation restrictions are a barrier to access. In addition to the family, I wish that friends can easily visit.

My original solution was to die at home. I have changed that plan as the burden on Janet and my family to care for me as I near death is too great and the cost of round-the-clock nursing care is not covered by our insurance.

There are some arrangements to make with the funeral home and family physician to expedite the removal of my remains. As a patient registered with the Palliative Care Team at the QEII Hospital, they will take care of and expedite all the arrangements.

In the big scheme of things, this is a good solution. As my cancer spreads, I will be tired more of the time, have a reduced appetite, and my organs will become diseased and not function as they should. There will be numerous noticeable physical changes and an obvious degradation of my energy level as described in an article I wrote a while back titled Death and Dying.

At this point, I will not have any active treatment with the exception of meds to help me be more comfortable and manage pain should that become a problem. My expectation is that I will be pretty healthy until my organs, especially my liver and then my kidneys, begin to fail. At that point in time, I will find it too challenging to be out-and-about. I will be at home most of the time. I suspect I will have to stop driving around that time. My hope is that I can still be active at home, cook, host meals, and have lots of company.

I will need nursing care to augment what Janet and others can offer. Our insurance will cover this up to a point but does not fund round-the-clock care which I expect to need as cancer spreads and my body is on a path to death.

At that point, the best solution is to move to the Hospice on Franklyn Street. Janet will be able to sleep in my room and family and friends can visit around the clock although there is a two-person limit on how many people can be in my room at the same time. That two-person rule is relaxed when my death is clearly imminent so anyone wishing to be present at the moment can be.

There are several common spaces that are quite comfortable for the family and can easily accommodate our children, spouses, and fiance. There is a well-equipped kitchen in the “Great Room” where a meal could be made or reheated. 

The Hospice is an excellent final destination for me and where I expect to die surrounded by loved ones.

My Palliative Care team monitors the state of my health and will take care of the application to Hospice at the appropriate time. They will coordinate with our family physician to sign the death certificate and our funeral home to have my remains picked up. Having those items taken care of will ease the burden on my family.

As always, thank you for being an important support pillar in my world. It provides me with such positive vibes each and every day.

Peace, Love, and Laughter

And a final recognition of how God is such an important presence in every moment of my life and a constant source of courage as my cancer adventure continues.

13 Replies to “Palliative Care Team Followup”

  1. I can’t believe how much you continue to teach me, Phil, even through these difficult times. And your flowers are beautiful!

  2. Phil as I read this I am left thinking of the strength and courage Janet and yourself have. The grace and dignity with which you fight is awe inspiring! God is with each of us throughout our journey of life. Some accept with open arms and other waste the time by.
    Thanks Phi! Mat, Gen, Roman and Mia Sabinski

  3. I keep getting stuck on these words; ” people with a life-limiting illness. ”

    We’ve been involved in many of your adventures, roughly weekly, and its clear that your living busier than the average 3-people-do.

    Keep it up, you’re paying down a great template for others.

  4. Thank you for sharing your journey, Phil. Not only inspiring, but every time I read one of your posts I feel like I’ve learned something invaluable.
    I was reflecting just the other day that you are the reason I began performing musical theatre. When I was 14, you invited me to be a part of a show Drew was rehearsing – and the rest is history. Funny how such a simple gesture can change someone’s life. Thanks, Phil!

    1. Helli Geordie

      So nice to hear from you. I remember those days when you and Drew were on parallel paths but you took it to a new level as a triple threat. I look forward to your next “Rat Pack” show. Your CD was my most listened to whenever we did a road trip. Sadly we don’t have a CD Player in our new car so I’m missing your voice even though I regularly play Rat Pack tunes.

      Peace, Love, and Laughter

    1. Hello Zazia

      It is so nice to hear from you. I hope you are well and continuing to have lots of adventures with your family. I had hoped to have a European trip but I wouldn’t have medical insurance and hospitalization would be financial ruin.

      Peace, Love, and Laughter

  5. Hi Phil,

    I have been following your posts and am in awe of your courage and resilience from your diagnosis and how you have managed living with cancer to now how you are preparing for the inevitable. I remember fondly our many chats at Dal and conferences about online learning as well as your support as a colleague and mentor. Wishing you peace and time with your loved ones. Trish

    1. Hello Trish

      It is so nice to hear from you. We did have some wonderful moments during our time at Dalhousie. I look back on many of the special moments we shared and am glad our paths crossed. You made such an important contribution.

      Peace, Love, and Laughter

  6. Hi Phil,
    Your post was written on my birthday, the 29th. I turned 61; it’s my 5th year from diagnosis of Stage III ovarian cancer. You’ll see on Facebook I just posted photos of our trip to Niagara after that, wearing the nor-easter you sent (to add to my hat collection). The cancer has been inactive for two years now and I’m even on holiday from preventative treatments. But in all that, God’s Spirit in me and all, I haven’t managed the aplomb with which your journey continues. My 90 year old mother-in-law, living her last days with colon cancer lives with us. She may go on to hospice, but so far Ed, myself, and Ed’s sister have been able to care for her with the aid of visiting nurses. I think your plan is very well thought out. As I discover more about hospice here in the US, I hope it can match what you’ve discovered in NS. Yes, peace, love and laughter back at you, Laura

    1. It’s funny that you say “I haven’t managed the aplomb with which your journey continues” as when I first learned about my cancer, I formulated my plan to live life as large as possible modeled after how I think that you approach your adventure with cancer. I no longer use the term “battle” as that assumes there is a chance of a win which is not the case. Our Hospice here is absolutely remarkable. There is even a space that my wife, our five children, two spouses, one fiance, and I can sit at the table together. Of course, this depends on my condition when I enter the Hospice.

      I am doing okay and celebrate the days when I feel well and near-normal health-wise.

      And I do take comfort that I feel God in my life always.

      Peace, Love, and Laughter

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.